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.