In the blink of an eye

As a mom/wife/mom/sister/friend/ daughter/ I don’t think we’re ever prepared for the next stage. The next stage in life, what’s waiting just around the corner, or what’s to come. No one tells us about this. Until we’ve transitioned. Until we are in the thick of it. Kind of like childbirth. No one tells you about all of the gory, painful, body changing that happens until you experience it yourself. 

Our family is typically in a state of chaos. Too many activities, too many places to be, too many games, too many invitations, not enough organization, not enough planning ahead, not enough hands to help. It’s usually all about the not enough and too much, mixed in with a little bit of being 15 minutes late to everything. And while we still have our chaotic days and moments, trust me, I’m noticing a shift. Those crazy and chaotic days are becoming fewer and far between. This is the stuff no one talks about. No one tells you about this. And in the blink of an eyes it’s gone. No one tells you about the day your kids actually entertain themselves, and are capable of feeding themselves. Or the day your kid would rather spend sleeping over a friends house than curled up on the couch with their family, a redbox movie and popcorn. I’ve heard people say it, I’ve read the poems, I’ve listened to the lyrics on the radio but now, now I am living it. I am living quiet Friday nights with kids who get along and find playmates in their brothers. Life long friendships are being formed while I soak in a bubble bath. In the blink of an eye. Saturday mornings where everyone sleeps in, or quietly lays in bed, or better yet serves themselves and their brothers breakfast while you are in bed with coffee and a good book until well past 10 am. Sunday mornings where your children beg and plead to go to church service because they actually know what is going on, love singing and worshiping the Lord, and are no longer clinging to your side when you drop them off at children’s church while you go and enjoy service sans children. In the blink of an eye. They can get themselves in and out of the car, and grab their backpacks/cleats/instruments without your help. And buckling seat belts? Forget it they’ve mastered it to the point where you even offering to help them is embarrassing. In the blink of an eye. Gone are the days of 7 am wake up calls, co sleeping, carrying babies on your hip/in a sling just so you can accomplish one.thing for the day (as are the toned arms from carrying said babies), gone are meet ups with other moms so your kids can interact and socialize, but mostly so you can put on decent clothes and justify a starbucks drive thru run all the while having adult conversation with other mommas. In the blink of an eye. Gone are the days of their survival being dependent on you. Now they have chores, and night time routines they can facilitate and manage themselves. Gone are the days of figuring out the most efficient way to bathe 3 kids after a long day. Now they can decide who showers first and who helps their youngest sibling shower. In the blink of an eye. The days of biting one another are replaced with tattle tales. The days of boo boos needing mommas hug are replaced with them searching for the box of bandaids themselves. Cries for “momma”are replaced with “I’m bored.” The days of monsters under the bed and in the closets are replaced with wanting to watch movies with those monsters. In the blink of an eye. Diaper bags, strollers, and sippy cups are replaced with skateboards, scooters and bicycles that they can ride by themselves. 

Mommas take it from a momma who had 3 babies in 4 years. Who spent 5 years of my life either pregnant or nursing. Years of diapers followed by months of potty training. 100’s of hours spent playing on the floor with cars or trains or doing whatever it took to stop the crying. Hours upon hours deciding whether or not a fever warranted a 3am call to a pediatrician. Nerves that are shot from dropping your oldest off for his first sleepover as you drive off with hot tears streaming down your cheeks secretly hoping in an hour he calls you to come pick him up. But the phone never rings. Until the next morning when he’s successfully had his first sleepover, and isn’t ready to be picked up until after lunch that day.

In the blink of an eye it’s all gone. Nursery rhymes are replaced with Fetty Whap on the radio and the whip and nae nae dance. Rice cereal and breast milk are replaced with late night drive through runs after sports practice.

In a million years I never thought I’d be on “the other side.” Seriously. But I am. And I’m here to tell you one day you will be too. Seriously. You will be. We have made it through the sleepless nights, the countless diaper changes, the emergency trips to CVS for Gatorade and pedialyte, the first day of preschool, the first day of kindergarten, the first day of soccer/baseball/piano lessons, the first jump off the swim club diving board into a 12 ft pool, the first time a coach had to pick up a kid to make it to a playoff game because another kid had tutoring, the first time all 5 of us came down with the flu, the stomach bug, strep throat, the first time we put our oldest on the bus for kindergarten at 8:30 and he didn’t return home until almost 4. For the mommas who are standing in the grocery checkout line sweating bullets because you have just survived a trip to the grocery store with 3 kids under 4 and you are sure you left with nothing on your list, but your cart is full because your kids were tossing God knows what in the cart, just so you could make it to that check out line- I know where you are standing. To the momma who is up at 4 am nursing a baby who she just nursed at 2:30 and 3:30 I know where you are. To the momma who doesn’t think there is an end to the tunnel. There is. Believe me there is. I have been there. I have lived it, and I am standing on the other side. And it will go in the blink of an eye. 
   
    
    
    
    
   

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Transitions got me like…

Confession? I haven’t attended church since before my uncle passed away last May. And to be perfectly honest, along with complete devastation, came anger, confusion, and retaliation towards God for letting this happen. How could he take someone who was not only incredibly special to me but to so many people around him?  How could he take someone who meant so much to so many? A man who always did the right thing. A man who was was always willing to do anything for anyone. A man who constantly provided for his family. A man whose wife is an Angel on earth. How God, How?  Why?  These are the words I have been wrestling with and crying over the past 10 months, and  I’m just now beginning to allow myself to process all that has happened in the past almost year.  I am finally at the point where I can say my Uncle’s name and mention him in conversation without tears welling up in my eyes, and a hard knot in my throat.

 

The past 10 months have led me on a journey of self discovery.  A journey to answer why. To figure out this thing we call life. A journey I never saw coming-much like the passing  of my Uncle. A journey of who I am, what I stand for, and what I desire for my future.  A journey of realizing that things change. People change. Places change. Situations change. My eyes have been opened to suffering.  I know firsthand that the world is full of suffering- even to those who may not deserve it.

 

So today with an open mind, shaking legs, and a smile painted on my face, my kids and I faced one of the hardest things. We went back to church.  The place where I felt most let down by God. I had done my prayers. I had made my prayer requests each week.  I had shared my prayers with the prayer warriors in this church and a few others. I had asked a few close prayer warriors to lift my Uncle up. And in the end God still decided to call him home. So hand in hand we walked through those doors, and saw all those faces and it wasn’t nearly anything like I had anticipated. It almost felt like we were able to pick up where we left off. The same smiling faces greeted us, called out to us, embraced us, and welcomed us. Wholeheartedly. It didn’t matter that we haven’t been there in close to a year. They were overjoyed to see us. To know that we were back and ready to worship. To fill up their community.  And you know what? My relationship with God is the same. And ironically that is what the sermon preached to  this morning, and I have to laugh because God knew exactly what I needed-just as usual. John 1:9 says, “Have I not commanded you? Be strong and courageous.  Do not be afraid. Do not be discouraged, for the Lord your God will be with you wherever you go.”

 

Yes the death of my Uncle caused me to second guess God and his ways and reasons for everything.   It made me beg the question over and over “WHY?”  But through it all he never left me. He was still there. Even when I wasn’t ready or willing to talk to him, or communicate with him, He never left me.  He made sure to stay close by, always watching. The past few weeks and months have allowed me the opportunity, little by little, to begin interacting with God. To talk with him, share with him, and put my trust in him. Today was a big step.

 

I’m realizing that our entire family, not just our small unit, is in a season of transition.  And in life there will be many, many transitions. And in each transition He will be there. Waiting. Watching. With open arms. Just like those who greeted me and my family at church this morning.

 

For so long my prayer was always that through the trials and tribulations with my uncles health that God would  keep our family close together. That this transition, this HUGE wouldn’t change our family dynamic. That we all still stick together, and not separate. And I’m realizing lately, as I look back on the past 10 months, he did that. He kept our family close. Tight knit. We have learned to lean on each other in ways we never have before. We have each made sacrifices so that we can help others when they need it.

 

And so now I feel like my prayers are changing. And it’s not just about them changing, but about me being okay with them changing.  It’s scary when you realize how big your dreams are and how much you want from this life. If you’ve read any of my posts, then you know that I am against change. But what I am realizing lately is we need change. Without change everything and everyone would stay the same and that sound pretty dang boring to me. So once again I find myself in this place of transition. My prayers used to be for comfort and security. Closeness. Stability. Routine.  Now something just a little bit different has been laid on my heart. Now I feel myself trusting Him again. I am ready for Him. With open hands, an open heart, and open arms.  Now my prayers have shifted to bigger, bolder prayers.

Lord whatever you call me to I will answer.  I am ready to answer when you say.  Lord I trust you. I trust that you know better than me. I surrender all of my plans, and wishes, and dreams and I am giving you control. Control of every single thing in my life. From my morning commute, control of how my day plays out, what clients I talk to you, my daily struggles, my health, my relationships, my shortcomings, my strengths, my stubbornness. I know YOU have a reason for every single thing that happens. I know that your plans are greater, bolder, better, and more fulfilling than any other dream I could ever imagine. So I am ready Lord. Here I am, and here I’ll stay at your feet handing it all over. Recommitting to you and your ways, and your truth and your life.  I am ready to walk with you again.

  

Flotation Philly 

A few weeks ago I had the pleasure of I visiting

Flotation Philly located in the Fishtown section of Philly. If you know a little about my health history then you know that 3 years ago I suffered a stroke, and that I have declared that this is my year for making huge strides when it comes to my health. I heard about
hTh

is facility from a friend at my yoga studio and it sounded right up my alley. My struggles in my

daily life post stroke are mainly cognitive rather than physical. Which is a blessing and a curse all at the same time! Basically for me too much noise, too many lights, too much chatter, too much of any stimulation going on can trigger me helpless. It’s literally too much for my brain to handle all at once. I think that is one of the reasons I have fallen head over heels in love with meditation. Meditation allows me those quiet, still moments of completely shutting my brain down in order to fully restore myself. 
After navigating my way, by myself ( woo hoo) to Flotation Philly I was greeted by the owner Russ and an incredibly intricate and beautiful mural as you walk in their front doors. From there Russ took me back to my room which contained my evolution float pod, a shower, and a vanity area for me to put myself back together after my experience.  
Russ started this business after first trying out flotation pods for himself and seeing the benefits to him and his body. I admire that. He didn’t start this business because it was the newest fad, or only to make money. You can tell from just one conversation with him just how genuine and caring of a person he is and how much he wants his clients to enjoy and reap the full benefits of flotation therapy. After Russ walked me back to the room he explained everything in a very down to earth, yet professional way- always leaving space for me to answer questions when I had them. He took the time to make sure that I was comfortable with the process and that I understood the reason behind flotation therapy. Sensory deprivation isn’t something only those who have had brain injuries benefit from, it something that many people can benefit from. Russ even made a few suggestions of what to do to get my wiggles out once I was inside of the pod that included stretching, a few yoga poses and then finally finding stillness within my body- this certainly came in handy! 
Once Russ left the room I took a shower- you must shower before entering the pod with shampoo and body wash, which wasn’t difficult because the shower was such a pretty space and all of the toiletries are provided right there for you! Once you shower you are ready to enter the pod.
Upon entering the pod ( which is only 10 inches deep, and filled with 1,000 pounds of Epsom salt) your limbs automatically lift up and stay there on their own. Two words- zero gravity!! I have never felt anything like it. It was completely effortless and completely uplifting! Once you lay back in the pod you have control of the lights and music, as well as shutting the pod completely or leaving it open or any level in between that you are comfortable with ( the top of the pod is on hydraulics). I first started off with both music and lights. After some exploring in different positions and a couple of up dogs ( thanks to Russ’s suggestion) I felt a little calmer and at ease with being in the pod. At that point I turned the music off and shut the lid of the pod- not entirely- but almost completely. The lights in the room are off so there is no outside lights shining into the pod. There’s also a small piece of a pool noodle in each room and for me, with my neck issues, it worked wonders. It is a strange feeling, one that Russ assures me you become more comfortable with the most float sessions you do, to let you neck sink back and support itself. So for me, the pool noodle was very helpful. I even tried it in a couple different positions, the base of my neck, and then rolling it a little higher up to the base of my skull ( this is where I felt most comfortable with the noodle). With the music off I was able to sit in complete silence, and just appreciate and admire the quiet. The calm. The stillness. The nothingness. No to do lists popped in my head, no things I had left undone at home or at work, no thoughts of what I was going to do for dinner, or how much homework my kiddos would be coming home with, not even if I would be able to find my own way home! Seriously- nothing came to mind. I wasn’t even able to string together a single thought. Every time I did my mind would just drop it mid thought. And for me, as a person who generally has a hard time shutting brain off it came very easily.  
Then, I took my float to another level by turning off the lights. So here I was in this pitch black pod in this pitch black room with no light and no noise. Who was I? I was a girl who was living in the moment and taking full advantage of the experience at my fingertips. So there I laid- or floated rather- in complete silence and darkness. My arms and legs extended completely in the pod. For me, this was the most beneficial part of the process. This is where I took the most from my float experience, and I believe this is the fullness that is best experienced from float therapy. My mind took me to some pretty trippy places during this time and this is where my body found complete and true stillness. There was no movement. Not in my fingers, my toes, my arms, or my legs. Complete stillness. Complete weightlessness. Complete calm. I could hear and feel my heartbeat. I’ve felt my heartbeat before, but to be so still that you can hear it at the same time? That’s a whole other level of connection to your mind and body! 
Flotation Philly was an experience unlike any other. I will admit I had my apprehensions and anxieties before heading into my appointment, but Russ made it super easy to leave all of those at the door. For someone who has suffered a brain injury and fights most days keep my sanity in a super busy world this was an extremely beneficial experience, and one that I know I will be back for.  
Interested in trying flotation therapy out for yourself? Use my coupon code LIVELOVEFLOAT for 15% off your next visit by using coupon code Also please note that floats come in 60 and 90 minute sessions, as well as various packages for any number of floats. I experienced the 90 minute session which I felt really allowed time for my body to adjust to the space and be open to all that the float experience had to offer. It really only felt like I was in there for 30 minutes! Happy floating! 

Surrender, from a broken Jesus girl 

2 weeks ago I attended If: Gathering Local. I stepped out of my comfort zone and for 2 days I spent time with women I had never met. Ever. Complete strangers. About 30 of them to be exact. But we all had one thing in common, God. A love for Jesus and His kingdom and His ways. We all met together to attend If:Gathering. The heart of the conference was in Texas, and there was a live stream being broadcast throughout churches, and homes all over THE WORLD! I wanted to attend this conference for a few reasons. The first being that I have always wanted to attend a Christian conference and be surrounded by the love of so many people walking the same path as me. People who aren’t afraid to share their faith, their hearts, and their stories about what God has done and is doing in their lives. This was the closest conference to my home that didn’t require airfare, and overnight hotel stay, or driving 10+ hours in the car. 

Another reason I wanted to go was because I wanted a personal revival to happen within me. A newness. A rebirth. A becoming. And I received exactly that. That weekend I recommitted to Jesus, and God and all of His ways.

Lastly, I went for confirmation. Confirmation that their are others who believe as I believe. Others who struggle just as I struggle. Confirmation that this is the path I am supposed to be on. Confirmation that community does exist. Confirmation that others too are stepping out of their comfort zones. And probably worst of all… Confirmation that He does exist, and that he loves me, he redeem me, and he has laid a path for me. 

Those two days were so moving, and exactly what I needed. I told myself before I got out of my car in the parking lot and headed into that church that I would do whatever, allow whatever, and be whatever I was called to be that weekend. No holding back. I wanted to give God the glory and praise him like I had never praised him before! And so knowing I made that commitment I walked through those doors and into an unknown space with an open mind, an open heart, and open hands. I worshipped harder, I prayed harder, I sang louder, I lifted my hands higher, I shared harder, and I laughed harder than I ever had before. EVER! I met some incredibly amazing women, in person, and via the live stream as well. There were goosebumps the entire weekend. And it certainly reconfirmed everything I was doubting. The fear, the anxiety felt like they had been chipped away just a bit. The pause I have had in my relationship and my faith, and with my God was restored. Restoration. Wholeness. Joy. Satisfaction. Completeness. 

I left that weekend exhausted mentally, physically, spiritually, and emotionally but OH SO FULL!! Full of passion, full of love, full of new relationships, full of His words, His goodness, his grace, his glory, and best of all I left having a new relationship with God.

So two weeks later what does this all mean? It means my life-almost- looks completely different. I’ve recently read Jennie Allens ANYTHING. And man oh man did that book blow my mind! As much as I enjoyed it, I also struggled a little bit because I also prayed ANYTHING to God, but I wasn’t hearing anything in return. And then about half way through the book I realized that “anything”was Jennies prayer-not mine. So I listened and I prayed and when I felt a shift I knew what my prayer was to be… I surrender. I surrender my life, I surrender my worries, I surrender my fears, I surrender my anxiety, I surrender my shortcomings, I surrender my debt, I surrender my health, my mind, my job, my marriage, my kids, my plans. I SURRENDER IT ALL!! To him. To His kingdom, His ways, His path. I’m letting go. Truly, wholeheartedly letting go. And I’m praising Him. I’m listening to and for him. I am obeying him. I am laying it all down at his feet. 

All of this made me realize I am just a broken Jesus girl who after 31 years has fully realized just how amazing our Lord is. I am just a broken Jesus girl who has decided to let go and let God. I am just a broken Jesus girl who is handing it all over. Every single piece. Here I stand with hands held high … I am just a broken Jesus girl who has recommitted my life and it’s works to God. I am just a broken Jesus girl who cannot wait to see the path God has chosen for me. 
What does your surrender look like?

  

40 Days: Week 1

40 days week 1
We just finished week 1 of 40 Days to a Personal Revolution and keeping with my promise of sharing this experience with you here are my thoughts from this past week..

Law 2 says: Be willing to come apart- the big part of this law for me is letting go. Letting go of the control. Letting go of constantly being on point. Letting go of having it all together. Letting go of constantly filling up others wells while mine runs completely dry. This week we were traveling as a family, and I experienced this in its fullness. I laid down in bed, around 12:30 pm, and I took a nap! Usually when I attempt to do something like this thoughts of everything else flood my mind. Ways I could be spending my time being more productive usually involving laundry, cleaning, or attending to my kids. But that day this law and a gentle reminder popped in my head telling me to give up control, and to give into what my body needed and I napped for 1 whole hour! Hallelujah!

We also have excavation questions to answer each week. Here are my questions and answers from week 1…

1. How much am I taking responsibility to learn and grow from the experiences, both easy and difficult, that I have in my life? I am taking more responsibility than ever before to learn from experiences. Now rather than looking at an experience and saying “why me?” I am looking at it and saying “what is this experience teaching me? What have I learned from going through this?” I am realizing this is my life and time spent asking “why me”, time spent people pleasing, and validating others opinions of me is exhausted and time wasted. When I do those thing I’m not being responsible of my time or my views. 

2. What are my beliefs about:

My body– while I believe my body is strong and sturdy I am also very frustrated with my body for not allowing me to always do what I want to do. My body gives me a lot of limitations. Limitations that cannot be helped, avoided, or cured. 

My relationships– I am realizing the relationships I have need to have purpose. They need to serve me and they need to serve others. And I would love it if they served us both really, really well. I’m also realizing that it is okay to have surface relationships, because not every relationship is meant to go below the surface. This just makes my solid, below the surface relationships mean that much more to me.

My work– I am starting to develop and maintain more self-worth which is turning into more worth for my profession and my position in that profession. I’m realizing that while everyone may no agree with my opinion, I am allowed to have an opinion and I am becoming more comfortable with sharing those opinions with others.  

My spirituality– I believe we serve an almighty God. One who is forgiving, gracious, patient, and who knows our every desire. I know who I serve and what I stand for. 

Money– I believe that, for me, money is extremely stressful. It can turn my mood upside in a second. I find the more I “crunch the numbers” and the more I focus my attention and energy on money the more I stress. It’s no secret that money makes the world go round. We literally need it for survival. Food, clothing, and shelter wouldn’t be possible without money. This is a constant battle I have, internally with myself. Sometimes it is a daily internal struggle that I am trying to look at from a different angle.

3. When do I feel most present? I feel most present on my yoga mat. When I come into my yoga studio, lay down my yoga mat, and set an intention for my practice. 

4. Where in my life am I hiding? I feel like I am hiding in my relationship with my husband. I don’t always maintain open communication, but rather I maintain the expectation that he knows what I am feeling, thinking, or wanting. This is not the case. He isn’t able to read minds. I am working on being more mindful of this.

5. Where in my life am I flirting with disaster? I am flirting with disaster when I:
-over schedule myself and my family ( currently reading a book about being less busy!)
-having the mindset of having to do it all, by myself.
-thinking that I can push my body to extremes, rather than finding middle ground.
-when I don’t fill up my well in order to fill up others wells.
-when I don’t eat healthy, light, nourishing foods and my body becomes heavy, sluggish and foggy. 
 
Now we are onto week 2: Vitality

Law 3: Step out of your comfort zone

Law 4: Commit to growth



Stay tuned for this weeks experiences, and questions!

  

40 Days to a Personal Revolution 

Last night my yoga studio started our 40 Days to a Personal Revolution program. This is my second time participating in the program and I am so darn excited! No only do we have an amazingly talented leader, but I am so ready to dive in, dig deep, and see all the changes I make in my life for the better. The first time I worked through the program, for me, there was a lot of fear, apprehension, anxiety, and holding back. This time the vibe already feels completely different. There’s a calm, almost a stillness I felt in last nights meeting. I feel like I am entering this program from a place of being grounded. 

During our last program in the fall of 2015 I uncovered so many truths within myself. I was able, for the first time ever, to articulate and verbalize thoughts I hadn’t been able to for years. It felt like all of those webs that were tangled in my brain became untangled. I had some pretty huge shifts during the last program and so I thought it would be neat to document and blog my way through the program this time.

 
Last night, as a group, we set ground promises- not rules. Why? Because rules are made to be broken, promises are forever. And for me, this program is forever. This program will forever change me. When I am finished with this program at the end of February I won’t be the same person I was when I started. 

During the program we make a commitment to practice 6 days a week, be mindful of our eating habits, AM & PM daily meditations, and attend weekly meetings.

  
We were also asked last night to set some personal promises for ourselves. Attainable goals that would set us up for success. For me that looks like:  

– Being authentic and true to myself as well as those around me

– Getting uncomfortable 

– Sharing without fear

-Trusting the process-wholeheartedly

– Digging deep

– Building community 

– Less shame

– No internet/social media after 9pm

Each week we will work through 2 of Baron Baptiste’s Laws and 1 chapter of his book. This week our laws are:

1. Seek the Truth

2. Be Willing to Come Apart

And our chapter is: Presence

I cannot wait to start this journey, and see what lies on the other side of it! 

  

   

A Piece of my Heart.

This week was a struggle. Looking back I was over scheduled, over tired, and over everything by Friday at 4:30.  Although I did have moments of Joy shine through and brighten moments of my week, my week overall wasn’t very joy-filled.  Since making this realization I’m starting to go back and go through my motions, my emotions, my schedule, and my past week to figure out what the  major differences between Week 1 and Week 2 were because I did feel such a huge difference.

In the meantime, while I am trying to figure all of that out, I came across an article in a book I am reading by Brene Brown called I thought It was Just Me (but it isn’t). Making the journey from “What will people think?” to “I am enough.” First of all, WOAH!! This book has been an incredible eye opener, for me. It has allowed me to know that I truly thought I was alone in my struggle and I am not.  I don’t think me reading this book should come to any of you as a shock. This is a year of me working through all.of.my.feelings. Even the not-so-great ones in order to better myself. In order to live more authentically. So, in my latest reading of her book I came across this incredibly powerful passage that related to my current life in almost every way possible. I had one of those, “this is everything I’ve been wanting to say, but don’t know how to say it” moments!!  And it felt so good, even if they aren’t my own words. They are still a stepping stone. A catapult into healing. A friend of Brene’s was working through infertility and decided to write a letter/pamphlet to those in her life who didn’t necessarily know or understand how to help her work through her feelings while on her journey. I am currently in the same position, not with infertility, but with my life post stroke. I am in a place of vulnerability, confusion, shame, discrimination, of being misunderstood, of being unrelatable, of being the minority. So for me, and for the sake of ridding my heart and mind of some of the shame that is associated with a life changing brain injury, along with taking back the power and progress in my life, I have decided to type the letter.  The only difference will be I am changing the word “infertility” with the word “condition.” Here it goes…

“I want to share my feeling of my condition with you, because I want you to understand my struggle.   I know that understanding my condition is difficult; there are times when it seems even I don’t understand.  This struggle has provoked intense and unfamiliar feelings in me and I fear that my reactions to these feelings might be misunderstood.  I hope my ability to cope and your ability to understand will improve as I share my feelings with you. I want you to understand.

 

You may describe me this way: obsessed, moody, helpless,envious, too serious, obnoxious, aggressive, antagonistic, and cynical. They aren’t very admirable traits; no wonder your understanding of my condition is difficult.  I prefer to describe myself this way: confused, rushed and impatient, afraid, isolated and alone, guilty and ashamed, angry, sad and hopeless, and unsettled.

 

My condition makes me feel confused. I always assumed I was strong. I spent years avoiding being “weak.”

 

My condition makes me feel rushed and impatient.   My condition came on 3 years ago. My life plan is suddenly halted. I worked so hard to be the very best I could be and now I feel I am at the bottom.  

 

My condition makes me feel afraid.  My condition is full of unknowns and I’m frightened because I need some definite answers. How long will this last?

 

My condition makes me feel isolated and alone. Reminders of unaffected people are everywhere.  I must be the only one enduring this invisible curse.  I don’t share with others, because they can’t relate. 

 

My condition makes me feel guilty and ashamed.  Frequently I forget that my condition is a medical problem and should be treated as one.  My condition destroys my self-esteem and I feel like a failure. Why am I being punished?  What did I do to deserve this?  Am I not worthy of a normal life?

 

My condition makes me feel angry.  Everything makes me feel angry, and I know much of my anger is misdirected.  I’m angry at my body because it was betrayed me even though I’ve always taken care of it.  I’m angry at my partner because a part of me feels like he will never understand my feelings of inadequacy.

My financial resources may determine the amount of answers I have surrounding my condition, and the amount of rehabilitation I am able to achieve.  I can’t miss any more work, or I’ll lose my job. I can’t go to a specialist because it means more travel time, more missed work, and greater expenses.  Finally, I’m angry at everyone else.  Everyone has opinions on my inability to overcome my condition.  Everyone has easy solutions.  Everyone seems to know too little and say too much.

 

My condition makes me feel sad and hopeless.  My condition feels like I’ve lost my future, and no one knows of my sadness.  I feel hopeless; my condition robs me of my energy.  I’ve never cried so much or so easily.  

 

My condition makes me feel unsettled.  My life is on hold. Making decision abut my immediate and long-term future seems impossible.  I can’t decide about education, career, purchasing a home, pursuing a hobby, getting a pet, vacations, business trips, and house guests.  The more I struggle with my condition, the less control I have.  

 

Occasionally I feel my panic subside. I’m learning some helpful ways to cope; I’m now convinced that I’m not crazy, and I believe I’ll survive.  I’m learning to listen to my body and to be assertive, not aggressive, about my needs. I’m realizing that good medical care and good emotional care are not necessarily found in the same place.  I’m trying to be more than my condition while gaining enthusiasm, joyfulness, and zest for life.

 

You can help me. I know you care about me and I know my condition affects our relationship. My sadness causes you sadness; what hurts me, hurts you, too.  I believe we can help each other through this sadness.  Individually we both seem quite powerless but together we can be stronger.  Maybe some of these hints will help us to better understand my condition.  

 

I need you to be a listener.  Talking about my struggle helps me to make decisions.  Let me know you are available for me.  It’s difficult for me to expose my private thoughts if you are rushed or have a deadline for the end of our conversation.   Please don’t tell me all of the worse things that have happened to others or how easily someone else’s condition was solved.

 

I need you to be supportive. Understand that may decisions aren’t made casually.  I’ve agonized over them. Remind me that you respect these decisions even if you disagree with them, because you know they are made carefully.

 

I need you to be comfortable with me, and then I also will feel more comfortable.  Talking about my condition sometimes feels awkward.  Are you worried you might say the wrong thing? Share those feelings with me.   Ask me if I want tot talk. Sometimes I will want to, and sometimes I wont, but it will remind me that you care.

 

I need you to be sensitive.  Although I may joke about my condition to help myself cope, it doesn’t seem as funny when others joke about it.  Please don’t tease me with remarks like “they were in such an uproar, I thought they were going to have a stroke” It’s no comfort to hear empty jokes.

 

I need you to be honest with me. Let me know that you may need time to adjust to some of my decisions. I also need adjustment time. If there are things you don’t understand, say so.  I need you to be informed.  Your advice and suggestions are only frustrating to me if they aren’t based on fact.  Be well informed so you can educate others when they make remarks based on myths.  Please don’t think that my condition will be cured if I relax more and stress less.  Don’t tell me this is God’s will.  Don’t ask me my need to justify my need to live life as I once did prior to my condition. 

 

I need you to be patient.  Remember that working through my condition is a process. It takes time. There are no guarantee’s, no package deals, no complete kits, no one right answer, and no “quickie choices.”

 

I need you to be strengthening and boosting my self-esteem.  My sense of worthlessness hampers my ability to take charge.

 

Encourage me to maintain my sense of humor; guide me to find joys.  Celebrate with me my successes, even ones as small as making it through a medical appointment without crying.  Remind me that I am more than a person with a condition.  Help me by sharing your strength.

 

Eventually I will be beyond my struggle with my condition.  I know my condition will never completely go away because it will change my life.  I won’t be able to return to the person I was before my condition, but I also will no longer by controlled by this struggle.  I will leave the struggle behind me, and from that I will have improved my skills for empathy, patience, resilience, forgiveness, decision making, and self-assessment.  I feel grateful that you are trying to ease my journey through this condition struggle by giving me your understanding.”    ~Jody Earle

 

My sincerest and most authentic hope in posting these words is that you can see that people who are suffering out loud, or in silence, are trying their very best every single day to overcome their obstacles.  We are people too. We just happen to be on this journey that has changed our lives. And we hope that you continue to support and understand us.