Sunday, June 5, 2016

when judgment becomes education

I typically write my blogs while Steve's still off in dream land. His body loves sleep, so he will go until 10:30 or 11 on average.  So after I wrote my blog yesterday, and did a few things around the house, I went to wake him up to give his meds before his dad and I did wound care.

However, he wouldn't wake up for 10 minutes.  Of course the PTSD from Steve's coma over Christmas had me worked up.  Finally opening his eyes, he's starring at me wide eyed and panicked. Because Steve has such debilitating anxiety I often say, if I'm not scared, you don't need to be.  Well, I was scared, so he was beyond it. 

So if you saw my facebook or instagram post you know we held medicine until later in the day, and gave his body a rest from turning.  He slept until 1:30 until I went in there and really shook him awake.  Yes, I literally grabbed his shoulders and shook him (gently).  Again, his wide eyes are looking into mine, this time no panic---more annoyed.

"Why did you wake me up, I was just in a deep sleep."  He typed clearly now that his eyes actually were open.  I feel a sense of ease that he's communicating more clearly with me and gratitude that he's sassing me.  Sass means he's just fine. :)

I got an out pour of love, and support from our followers, loads of suggestions and encouragement from our medical team helping me sort out the medicine, and yes even some judgment.  

I want to write about this judgment, and it's not coming from a place of "how dare she judge me" that I used to reside in.  I would cringe when people would question my motives, or question how I care for Steve, question our choices, etc.  I would immediately regret making our journey so public and like a turtle I would retreat in my shell, hiding from everyone's opinions and thoughts.

Here's where I stand with it now.  Steve and I talk through EVERYTHING!  There are so many things that go on with Steve's care that if it was MY choice to make things would be different, that's probably no secret.  The thing is, it's not my choice. So yesterday when the judgments came in it felt different.  I didn't want to retreat or even defend myself (although I am writing a blog about it...).  

I instead wanted to reply to all of them excited, "OMG you're judging me and I don't care.  Not one care in me!!"  I wanted to display my ego centered, "look at me rise above it" for everyone to see.  I was so happy that I wasn't bummed out by what people were saying to me that I almost missed the lesson.  

So I opened a dialogue with these people.  Really hearing what they were saying, and offering some education on Steve, his journey with pain and medicine, with natural alternatives, etc.  It was an area where simply not allowing them questioning my choices to not bother me, I had to also not gloat that it didn't either.  

People say things/ask things mostly because they want to learn.  They want to understand the situation.  I know sometimes the suffocating feeling of being told how you should be handling your situation from a stranger, and I know the feeling of wanting to hide or snap.  (Lots of turtle references happening here.)  However, when I look at it from a different perspective, that feeling goes away. These people weren't intending for me to feel judged, it's how I perceived it.  They were showing they care!

How many people do we push away because we perceived their actions wrongly?  Trust me I know some people just need cut out, I've cut out entire families I'm such a pro.  But as someone who used to ALWAYS get upset over a little feedback, I can honestly say if I spent time in an actual open conversation with them I wouldn't feel that way. 

We educated one another.  Loads of people educating me on some new alternative natural medicinal's that exist for pain and me educating them on pain with ALS and pain with Steve. It was lovely to have open conversations with others and to really hear where they were coming from and in turn them really hearing and understanding our story and where we stand.

So for those who must know:  Yes Steve has tried a load of natural medicines for pain from the green sticky we know and love to creams, and tinctures, to oils, and beyond.  Dosing and availability have always been our battle here.  It's so hard to understand Steve's body and how it processes things.  Because he is only receiving nutrients via IV it's hard to know what's happening when you put things in his feeding tube.  Also, that gastroparesus limits us from putting things in his stomach, we go straight to the jejunum. 

For those who have no idea what any of that means.  I'll break it down in simple terms: Steve has a condition where his stomach will not empty what is put in it so it will come up instead of going down.  After we experienced his 67 lbs phase was when we started him on IV foods.  We've always had hope and even still do that one day i'll be able to fix his stomach, but it hasn't happened yet. 
So because of this special feeding tube placed in him we can still give him meds and a few things via the tube by passing the stomach and straight into the intestines.  So absorption of things are hard to understand in this complicated system.

Then there are the sub-lingual (under the tongue) ways to take some medicinal magic, well that absorption seems to offer zero release.  We can't explain why?   

So we will be cutting Steve's medicines again.  We had him down to a much more digestible dosage before this wound he has been working hard to heal, and we will get him back there.  It will be rough because we do have to move him so frequently for wound care; but I believe we will get there.  

Ultimately we need to find the balance of quality of life for Steve and not causing extreme harm.  We know there are long term effects.  More importantly I should say Steve knows.  Believe me they've been talked about in great detail the past few hospital visits.  From Steve's stand point; all he has is this very moment.  He can't think about long term effects, because that makes him not want to try to keep living with this awful disease.  He can only think about NOW.  So that's where I will be also. Here with him, in this moment; doing all that I can to keep him safe and comfortable.  

Thank you to everyone who supports us.  It's hard to be on this journey with us, and I understand it. So many of you feel so much love and compassion for Steve, it's beautiful to see.  So thank you.  It carries us through these crazy waters.  

So our plan is onward and forward the best we know how. xox. 


  1. There is no one on the planet who could care for Steve better than you do, Hope, and you have the knowledge and experience to make the best decisions at the time. We live in a culture where so many people are self-proclaimed experts on everything, in spite of the fact they have no knowledge or experience, just opinions off the top of their head...which in general is useless, hurtful and a reflection of their character. Keep the faith, Hope!

  2. I have been following your and Steve's journey for several years now. Before my father-in-law was diagnosed with ALS, then with more interest once his diagnosis, and now since he passed 1.5 years ago, with hope for Steve and you. Thank you so much for sharing your journey. Please know that there are so many people out there who don't speak up or judge, they just appreciate your willingness to share, and this willingness provides much needed faith and hope for something positive for families who face an otherwise dark and scary journey. Peace, love and light to you and Steve.

  3. I cannot tell you how often your posts, blogs, & such recenter and ground me. I suffer with a chronic, debilitating illness that looks like a paper cut compared to ALS. Your strength, positivity,& love for each other humble me and give me reasons to keep getting up, putting one foot in front of the other when I'm able & lean on others when I'm not, but I never think of giving up. You inspire me every day. I pray a cure for ALS is discovered soon, certainly in time to help Steve, however, even now, while you fight so hard, you never cease to amaze and lift me up. Thank you both for being you.

  4. You are doing an incredible job Hope! You have no idea how much the sharing of this journey you and Steve are on is helping and affecting others; and not just people with ALS. Your story makes people realize what is really important in life. Love and prayers to you both...

  5. I admire both of you so much. Love, Hugs and Prayers!!!