Tuesday, October 6, 2015

I See You.

Most people who are chronically ill to the place where they are disabled feel especially as time has gone on that not only is their illness invisible to the outside world but that they themselves have become invisible too. They We often feel our fight, our struggle, our lives have become invisible to others. I have a friend that if she writes me, it is only about her and though I may talk about my health, she never acknowledges it and never or very rarely asks any health related questions. Like many her "How are you?" does not mean she wants to hear about my health and as my health dictates my life course-even if it doesn't dictate my attitude or who I am, it is a huge part of my life. And I feel completely ignored. I am not sure who I am to her and I'm not even sure if she wants to be engaging with me or thinks it is the Godly thing to do to keep talking to me. But it has been painful.

In the years since George attempted suicide, I have learned not to hold grudges or have expectations of others but simply receive. I have also learned very painfully that we each bring our histories (our issues) to the table and what feels like her invalidation of my being may be part of something in her life that she is bringing to the table. Putting time into trying to see the other person's perspective has changed my relationships even if there are very few people present in my life- the ones who are absent are the ones who I probably the relationships that I work the hardest at so that if they ever are reconciled or reconnected, I am able to step into them with a quiet heart and open mind ready to listen.

Most of us who are chronically ill-especially the ones who are severely chronically ill and have multiple illnesses to navigate feel alone and invisible. Something George and I have said countless times over the last three years is "If people ever knew what we really go through..."and then we move on because if we linger, we risk going down a dark path of "why another thing and another thing?!" Oh he is so tired. 

Life changed when I realized George was chronically ill-it was probably that first year after his attempt and I was like- oh my goodness-he has been severely ill since he was a boy. And every week a new epiphany of how he as a little boy, a grade school boy, an adolescent boy, a teenage boy, a college-age young man, a man in his early twenties and thirties when I met him. As long as he can remember--since he was that little boy, he has dealt with pain adults cringe to even contemplate much less endure for an hour. He dealt with it often and without relief and without diagnosis. And as any adult would develop co-morbid depression, a little boy who learned to cope by pretending life was something it wasn't was severely depressed throughout his life. Jaw dropping revelations of severe unrelenting pain and living most of his childhood/growing up years on crutches because of severely disabling arthritis in his knee.Umpteen knee aspirations and a few knee surgeries. It wan't until his late twenties that an emergency surgery on his abdomen discovered the Crohn's and changed a rheumatoid arthritis diagnosis to Crohn's related arthritis.  The newer medications of IV infusions of Remicade changed his life significantly even though things were just significantly better-not cured or "average." And that depression was always there...always. I thought he was laid back/easy going/lazy. No. He has been depressed his entire life. And even when he was using crutches for the arthritis and even when he was curled in a ball with the Crohn's, it was all invisible. He was fighting a silent fight that finally became unmuted after his almost deadly attempt and boy am I glad for this second chance. To quietly listen to him tell me about his pain whether emotional or physical and hear him vocalize how proud he is of himself for speaking the pain out loud and letting me know. The colors of his life are filling in at 43. And they are challenging and beautiful. 

The most important thing I can do for that man is to tell him "I see you. I hear you." I've texted with a few friends lately-all with multiple severe chronic illnesses -disabled -we areconnected to hold onto hope for each other. Connected so we can listen to each other's pain. Connected so that we can pray for and build each other up. Connected so we can validate each other's experience and say "I See You." 

Those of us with chronic invisible illnesses don't want our struggles to be invisible. I struggle with this because I do not want pity and I am not a victim to my circumstances. But I want to be known. I have a few friends who no longer have their beloved parent in their lives and it is heartbreaking because they still dial the number because parents can be those only people who wanted to know their struggles. I hear the brokenness in this group of people who are really severe including George because in some way we want someone to care about the hell we face each minute of every day without break and that isn't an exaggeration. 

I shower about three times a month and a couple months ago and listen to my KLOVE app when I heard this song called "Losing" by Tenth Avenue North and figured it was cheaper to buy the entire album than that song and another song on the album lives in my mind. And a verse just was rolling around in my head and usually I pick up my Canon Powershot to video journal about it. But I felt I wanted to share what I was experiencing as I have many backlogged videos-several of them happy ones that I can't wait to share; I just haven't had the chance yet.  And something happened. I don't now how it did--I just followed my heart and though it makes me feel vulnerable to share, I am sharing because I feel like it represents what I know many of my invisible friends are feeling. It is personal but I watch it and see others who are suffering. And to those of you who are dealing with an invisible chronic illness, this is for you. I am not under any illusion that because someone is healthy they don't struggle-we all do. We all want to be known and seen and validated and heard. But the longer I am chronically ill, the more alone I have become. I look to my left and to my right and the bleachers are pretty empty. Illness isolates me and this is why I want you to watch-becuase I want my voice to be heard for myself but more so for George and for anyone who has walked this way.  

I SEE YOU.



FYI: I only share other people's stories with their permission. George approved  and contributed to what I wrote about his story.

4 comments:

  1. I love you and George so much! Your video made me cry *hugs* That was an incredibly brave thing to film and post. Tons and tons and tons of LOVE. I ALWAYS want to hear about you and George, good and bad. <3

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  2. I second Vanessa's comments wholeheartedly, my dear

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  3. Thank you for sharing. I see you. I see God's hope in you. I love you!

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  4. Your video is so brave...and raw....I love it, even though I can't hear it.
    The captions didn't work. So, is it set to the song Worn? I looked up the lyrics and they are wonderful.

    You are very amazing my friend.
    I'm going to email you soon...hope you don't mind.
    Want to tell you a little bit about what is going on with me and comment on your last video....
    I adore you.
    much love to you and George.
    wendy

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