Learning to Walk in the Dark

From a young age, we are fearful of the dark. We are fearful of monsters under our beds, fearful of being outside after dark. We use all sorts of things to keep the darkness away: we have night lights in our bedrooms, flashlights for outside. This fear of the dark, somehow transfers into our hearts, into our minds. We begin to think that preventing any form of darkness is the goal, that any pain or loss should be avoided at all cost. While no one likes to experience pain or loss, we don’t live in a world without it and yet, no one seems to teach us how to not only walk in the dark times that we encounter but how to sit in the dark times when the darkness doesn’t go away.

Darkness, pain, illness are not new things for me. I have been sitting in the darkness for many years now. I am a professional darkness sitter.  

I remember many years ago, after I was diagnosed with CIDP, a friend at the time asking, "How are you still smiling? Things are awful right now and you are smiling…I don’t understand how." Well, I’m crazy! No, that was not my answer. My answer was this, this is an incredibly difficult time in my life, I have several choices in how I respond to this difficulty. I can give up and let this horrid disease kill me. I can whine and complain and be bitter about how life didn’t turn out the way I wanted it to. Or I can choose to find joy in the midst of a horrible illness.  

I am not sure who instilled that notion inside me, I’m going to have to assume that it’s the genetic grit that I inherited from both of my parents. They grew up in very different circumstances than I did: abuse, alcoholism, neglect were the things they dealt with as kids. A very far reality from my upbringing. Darkness is not a new concept to us.

I just finished reading a book about this topic. Barbara Brown Taylor wrote, "I think this may be a book about living with loss, which is tough enough in any place or time but is especially difficult in a culture that works so hard to look the other way." Again I ask, who is teaching us how to keep going when ‘shit hits the fan’?  

In her book, she asked some pointed questions that I know I asked years ago and continue to today when the darkness feels likes it’s going to envelop me.

-What can you learn about your fear of it by staying with it for a moment?

-Where can you feel the fear in your body?

-When have you felt that way before?

-What are you afraid is going to happen to you?

-What is your mind telling you to do about it?

-What stories do you tell yourself to keep your fear in place?

-What helps you stay conscious even when you are afraid?

-What have you learned in the dark that you could have never learned in the light?

Most people do not get very far into these questions before they want to stop. I fully get that. Facing the fears in your world is scary. Answering one question at a time and taking deep breaths will maybe get through the entire list at some point. Acceptance and peace comes after you’ve been able to stare your worst fears in the face and call them by name. 

There has been a lot of heartache in my world of friends in the past several months: death, suicide attempts, infidelity, divorce, major illness, marital strife, mental health issues with children…so much pain, exhaustion and hurt. It would be very easy to curl up into a big comfy blanket and stay there. But, I always come back to these thoughts when my world seems like it’s unraveling at the seems:

-sit (in the darkness) for awhile

-it’s ok to feel sad

-it’s ok to cry

-don’t give up just because it’s hard

-don’t give up just because it hurts

-life is still worth living

-love is still worth pursuing

-talk with someone about it

I am not sure why I needed to get these things out of my head and heart. I suppose I needed the reminder right now, maybe you needed a reminder too. Don’t try to be superman or superwoman and go at life alone, it’s too damn hard. Ask for help, it is humbling for sure, but the relationships you form will grow deeper than you can imagine.  

3 Years

It’s been 3 years since we came home from a life change. For those who weren’t around then, I’ll summarize the history.

2011 March: David was born. 

2011 December: I could barely walk.

2012 February: I was diagnosed with an extremely rare neurological disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) with no known cure.

2012-2015: I underwent various forms of treatment none of which cured me all of which made me feel horrible and more sick than ever.

2014 December: I decided to apply to a clinical trial in Chicago and was accepted!

2015 June: I underwent HSCT. Which involved high dose chemo and my own stem cells. Basically, we rebooted my immune system. I went into remission almost immediately.

2016 August: I developed a horrible case of shingles.

2016 December: we scheduled an emergency appointment in Chicago where I was diagnosed as having relapsed from the shingles. At that point I had difficulty walking, muscle weakness, my feet were completely numb, my legs felt like I was constantly being electrocuted and I had muscle cramps all over. We began treatment immediately. I’ve been back on dmds (disease modifying drugs) since December 2016.  

Summary of this weeks trip. I’ve improved since last year. Nerves are healing as I suspected.

We started out the day at the ridiculous hour of 4:00 AM. We flew out of Baltimore at 8:00. 

My first appointment of the day began at 10:30 with an EMG & NCV. This test is still as painful as ever and I hate having it done. The only good news from it was that the Dr. compared my results to last years and my nerves have significantly improved!

I asked about at what point do we decide which is worse for me the medicine I’m currently taking or doing HSCT again. Dr. Burt said, "we aren’t there yet, you’ll know, I’ll know and we will decide when that time comes".

So, we keep doing what we are doing, 8 needles a week, 200 ml of immune globulin injected into my stomach.

At some point, I’ll taper down my meds and see if I can take less...but I don’t see that happening soon.

My hand strength was good. I could squeeze 75-80 lbs. At my weakest, I could only squeeze 30 lbs.

I had to answer lots of questionnaires about how I’m doing. The only things I couldn’t answer yes to was walking long distances, standing for hours or running.

I met with a new neurologist today, Dr. Balabanov. He usually sees the MS patients but is now also seeing us CIDPers. He examined me. I have no reflexes still (a common side effect from CIDP). He tested my strength and feeling. Just like every other neurological exam I’ve had, he used a tuning fork on various points on my body and I had to tell him when I stopped feeling it buzz. This is the best I’ve ever done. He also took a needle and pin pricked various places on my body (all while my eyes are closed). I felt every single pin prick where in exams past, I often wouldn’t feel anything. All in all, I am doing well. Besides my lack of reflexes, I was exhibiting no visually physical symptoms of CIDP. That is huge y’all! HUGE!!!

Texting with a friend earlier she told me "I hate CIDP! But you are an inspiring warrior."

And to be completely honest, I also hate it.

But, as I told Paula (my nurse) I had to mourn the loss of it all...the life I thought I’d have but don’t, the things I can’t do that I wish I could, the time taken away from life and my family to do my medicine twice a week. Mental health is a big deal when you’re suffering from a chronic illness. I told my friend that there were lots of mental health questions I had to answer. Her response was encouraging:  

"...you’re journey to health has never been just physical. It’s a good perspective shifter. For me and everyone else.

Liiiiike she’s doing life on top of all the shitty chaos of a horrific disease."

So, with that, what I can control is only live in the now with what I know. And what I know is that despite having this awful disease, I am thankful for the perspective I have gained. That the little things that usually irritate aren’t that big of a deal in the scheme of things. We are making memories with our boys all the while knowing, my time is limited and we don’t know when the end date will be (do any of us though?). Being able to live life fully present is a gift I hope everyone gets to have without having to go through a tragic event like me.

Happy 3 Years to me. Now, I will eat cake.

Waiting for the good?

“...waiting around for our circumstances to deliver our expected life is a waste of energy.” Introduction to of Mess and Moxie by Jen Hatmaker.

I’ve been thinking this and saying things like it over this past year. Relapsing last year was a breaking of my heart.  

I LOVED:

-not being on medications

-feeling the best I’ve felt in 6 years

-having hope for my future.

The relapse took a lot out of me and my family. We (and many others) had sacrificed so much for my chance at remission. The hardest part in it all, is I had remission! I tasted it, felt it, experienced health and life again. For those of you who have your health, please, don’t take it for granted. I wish and hope for health again but I think I will likely have this muted version of it.

Reality:

Every 3-4 days I have the task of administering my medication. This process takes about 3 hours from start to finish. First, I have to clean my stomach with alcohol wipes. Second, I apply a lidocaine numbing cream to help with the pain from the needles I’ll be inserting. The cream takes about an hour to be absorbed into the skin. Usually during this hour, I’m finishing gathering my supplies I’ll need or prepping snacks and drinks for the kids so I don’t have to move too much later. Once my hour of waiting is up, I setup my work space. I like to set up everything at my kitchen table as it lets me have a large flat surface to accommodate all of the things I’ll need.  

First on my to do list, take Tylenol. You see, my body hates this medicine. If you’ll go back in time with me for a moment, you may recall a medicine I used to take called IVIG. This stuff wrecked me for a week every time I took it. Flu like symptoms, aseptic meningitis, no matter what pre-meds or post meds I took, the vomiting still happened, the fever still happened, the blocked bowels still happened. It was a living hell, every 3 weeks. Now, I’m taking a medicine called SCIG (subcutaneous immune globulin).  

Ok, so back to my setup. I lay out my drape cloth and begin to unpack my ziplock (that I prepared when my monthly shipment came in) of supplies: 2-60 ml syringes, 2-50 ml bottles of Hizentra (SCIG), 1 rate tubing, 1 infuse set with 6 needles, 1 red syringe cap, 2 transfer pins, several gauze pads, paper tape and 6 transparent infusion dressings.  

First, gloves on, then I have to prepare the line with the medicine. So I take my transfer pin, stab it into one of my bottles of medicine, then attach one of my syringes to the transfer pin. I slowly fill the syringe with the medicine all the while I’m thinking about how each bottle costs me $2,250, but I try to stay focused and not lose a drop. Then I attach the rate tubing to the infusion set then attach the now filled syringe to the rate tubing. I slowly fill the line with medicine and watch as each of the 6 tubes fill with medicine. I have to carefully watch each one as I don’t want any air in the line and I don’t want any medicine to sneak out at the end. Once the medicine is down the lines, I pick a spot to insert my first needle. I have to feel my stomach for hard spots to avoid as I have many from inserting needles all the time. I find a spot and stick in the needle, tape it down with paper tape and then cover it with the infusion dressing. I do this 5 more times. Once all my needles are in, I insert my syringe into my Freedom Pump and switch the pump to on. I still have one more syringe to fill before I can be done with this part, so I prepare the bottle, stick in the transfer pin, attach the syringe and again slowly fill the syringe with medicine and then attach a red cap to protect it.

Each syringe takes about an hour to be pushed into my stomach. So, I throw my trash away, grab my second syringe, get my water and make my way to the couch for a movie and a very careful cuddle while I get infused with the only thing keeping me walking. Every 3-4 days, for 3-4 hours I’m stuck (literally).

The process is painful physically as it leaves my skin very bloated, very tight and painful to touch. My boys usually look at me all hooked up and say either, “Are you sick mommy?” Or “I’m sorry you’re sick mommy.” They don’t understand how when they get sick, they take a medicine and it makes them better but yet mommy isn’t getting better and she’s always taking medicine. They try so hard to understand and many times I’m left saying, “Yes, I’m sick. It’s really confusing. It will make more sense when you’re older.” And then I wonder, will it really make more sense or are we just able to comprehend really sucky things better as adults?  

Which brings me back to the entire reason I started this entry, I can’t wait around hoping for a different version of my life. This is my life. All of the needles, all of the pain, all of the time. I have no choice in the matter if I want to live. The only thing I can control in this sucktastickness, is my response to it. I get to choose how this disease dictates my attitude, my beliefs, my hopes, my dreams, basically everything that it can’t physically touch. I’ve chosen to try to live a life as best I can with the reality of death on my doorstep, and I’ve discovered something very profound in the process. Life can be full here. Sweets can be sweeter, the sun can seem brighter, the air cleaner, people nicer...love deeper. And while I long for my health back, I do not long for the old me. I don’t miss the me who got caught up in what others thought all the time or the me who felt like I had to compete with other church wives to be the best or prettiest, or most thoughtful or most whatever. I don’t miss any of that. What I have gained is far greater than what I ever could have imagined. This ‘journey’ (which I hate calling it that) has brought a clearer perspective on what’s really important in life, and that is the only reason I will say I’m thankful for being sick, because being sick still sucks!

I prepared our Christmas cards while I was infusing and my lines kept getting in the way. For whatever the reason, I thought to take a photo. 

The juxtaposition of our happy, laughing family with my infusion tubes was a stark reminder that just because people look like they have it all together, doesn’t mean they really do. The things that aren’t represented in that photo are vast!  A few:

-my CIDP

-David’s ADHD

-Daniels crazy 3 year old tantrums 

-Jesses exhaustion from being on a deconstruction of self journey.

My point in this rabbit hole analogy, we need to stop judging each other by the little snippets we see. What lies beneath the surface, is far greater than we can know just by the few moments we see or the happy posts we read.