So much is out of my control and as if I needed more of a reminder my body has decided to stop working as of late.  I am an EPIC HOT MESS. I had surgery & the stress of that on my body caused my MS symptoms to reinvent themselves; something I am realizing they do in new seasons of stress or life changes. I still know nothing of what life will look like with a chronic illness but this new reality is forcing me to unpack a lot of what I believe about “being sick.”  I tend towards the tough it out mentality on dealing with hard things but God seems to be teaching me yet again there are just some things you cannot tough out, and maybe that is because we are not meant to.  Like many of us I am much more comfortable helping than receiving help or being seen as needy.  I so badly want everyone to think I’m fine but I am not fine. And the sooner I can learn to live in peace with not “being ok” maybe I will be able to find and grasp more hope & offer that same broken and unshiny but truthful hope to others.

The symptoms I am experiencing of MS are largely invisible to others (& have not let up since late July) so it messes with your mind because it is easy to be tempted to create facade of “fineness.” You cannot see that breathing is now something I need to concentrate on. You cannot tell that I may be pausing to talk to hide that fact that my leg in numb and I cannot walk. You can’t see the “brain fog” that makes juggling 4 kids schedules even more insane (as if I ever really did that well though :)- #keepinin100). I question whether every new bizarre thing in my body is just a coincidence or a MS symptoms leading to more lesions that are forming on my brain- whether a tingling sensation is my arm falling asleep or evidence of possible permanent disability. I fear a lot these days- these symptoms not going away or worsening leading to progressive MS.  I fear limited mobility and a wheelchair. I fear becoming a burden to my family and my husband.  I fear not being present in my life to my kids and my family and also to my passions.  I cannot stop thinking about the future but instead of dreaming up new adventures I am wondering if I will be able to travel at all. I don’t want sympathy or pity- I just want to give space to these feelings- to process them.  As a verbal processor it even gives me release to type this- to acknowledge that I am not toughing this out & doing just fineI think doing just fine is overrated; a false sense that hard things should not matter- that faith means blind trust instead of trusting that Jesus is MOST often found in pain and uncertainty- when we come to the end of ourselves and our “holding it together.”   It helps me remind myself, and maybe you need the reminder today too that it is ok to not being doing ok. Life is really hard and sometimes it is ok to live in that space.    
I’m right in the thick of this all and deciding to still share- because I think it is easier to share the lessons of our past rather that our fears and insecurities of right now. But for me bravery feels like acknowledging where I am right now and believing there is hope in this.  I am not sure I am doing what is right to care for my body and spirit but I do know I am trying to discern what is best with the help of a tribe of people who bring meals, love on our kids, send messages everyday, bring lattes, & pray.  I have medical care that I am so thankful for and I know is not the norm across the world.  I have a wicked sense of humor, dear friends I don’t deserve, an amazing family, and a Father who does not withhold ANY good thing from me- and these have seen me through darker places.  Like all of us, sick or not, struggling or thriving (or some beautiful messy mixture of both) I need self compassion- because I cannot ever be present to someone else’s suffering unless I can be present to myself & acknowledge my own pain. So, if you ask how I am and I make a joke because I need to laugh inappropriately at this hard place or I burst out in tears don’t be afraid- I am just trying my best to walk through not being ok- and that is OK- you don’t need to fix it (and you can’t- just like I cannot fix the suffering in your life)- just be present to me- that is it and I promise I will try my best to be present to you. I think the bravest thing we can offer each other is ourselves; insecurities and vulnerabilities and pain and trust that in those places we will see God do His best work. 

RoxanneSignature

  1. Anonymous says:

    I left a previous comment but I don't know if it got sent. but here the link I tried to send before https://www.facebook.com/notes/ms-god-stories-by-aaron-neuman/god-stories-and-other-notes-by-aaron-neuman/138255939635700