Even though I walk through the darkest valley, I fear no danger, for You are with me.
Psalm 23: 4
Here we are, nestled in the middle of Holy Week, and I’m emerging from a deep black hole back into the land of the living. Man, it seems bright out here!
In the world of chronic illness, I feel redundant to continue blaming writing inconsistency on being sick, but at the risk of stating the obvious, sometimes it is really hard to write when I am so sick.
I only have my own experience, and I do not consistently socialize with others in similar circumstances, but it seems that we, as humans, have a remarkable capacity to adapt to life with chronic illness. Over the past four years, I have multiple times adapted to a “new normal.” At times, this has meant toting around portable oxygen, being connected to tube feeds, staying contained in a wheelchair, or spending the majority of time in bed. With a cluster of illnesses that seem to operate in fits and spurts, the severity of my current normal waxes and wanes. Some seasons, my illnesses remain relatively invisible, while during other seasons, anyone with any sense of observational skill can see that I am indeed very ill.
I like to think that we have found such a good combination of less-invasive treatments that I might appear close to normal to those who don’t know my daily routine and limitations. When I am at my absolute best physically, with my routine of treatments in place and my body cooperating appropriately, I have found a status quo of existence. It seems live-able, through the grace of God and the support of friends and family; And in my best moments, I am at peace with my “best normal.”
After sitting here, deliberating for almost a solid two minutes, I cannot for the life of me land on a percentage of the time that I live in my “best normal.” Part of my difficulty in making this calculation is that my memory is horrendous. When blood is not flowing properly to the brain, at any point when I am standing up, when oxygen levels are unstable, or when my head happens to turn just the right way, my cognition is sadly limited. This is one of the most difficult parts of my disease process for me to accept.
Behind me, as I type this, sits an unread copy of “Brain Injury Survival Kit,” by Cheryle Sullivan. I do not have a brain injury, but the neuropsychiatrist, after several days of testing, stated that my brain operates similarly to that of someone with traumatic brain injury.
Some days feel like my own personal version of “50 First Dates” with Drew Barrymore. Now to get someone to put together a video telling me about my life for me to watch first thing every morning…oh, wait. I have two wild kids who are happy to remind me every morning before 7 AM of who I am and who they are.
So, all that to say, I am hard pressed to calculate how frequently I am living my “run of the mill” chronic illness life, working to manage pain, lessen my frequency of blacking out, passing out, and going into anaphylaxis, or near anaphylaxis, managing joint dislocations, pain, and injuries, and finding foods that I can tolerate. Honestly, this list of symptoms is my normal daily life. As I look at it, I find myself chuckling that it seems so mundane at this point in my journey.
If managing allergic reactions, frequent joint pain and injury, passing out and stabilizing wacky heart rate and blood pressure are my good days, what makes up my bad days? The last two weeks were consumed by really bad days for me.
Life gets really tricky when my children start getting sick: And kids get sick just about every other day when they first start school. As they are coming home with every cold, flu, respiratory virus, and stomach bug, I am dodging germs, only to have someone throw up or cough directly into my mouth (not an exaggeration). No mom (not even supermom) can avoid her children’s germs. At some point, we all must face the facts: It’s a losing battle. The germs win. No Lysol (which I’m allergic to), or essential oils (which I am also allergic to), or handwashing, or avoidance, or sequestering of children will work when a sick child wants to cuddle with mommy. Come on, who has the heart to close off their child in the basement??? Sign my death certificate, they are sleeping next to me on my pillow and breathing their germs in my face all night long until the fever is below 100 degrees.
And this is when my “new normal” is shattered. And it usually results in two weeks of being absolutely miserable, often leading to pneumonia, with many conversations between me and Jordan that sound something like this:
Jordan: “Are you sure you shouldn’t go to the hospital?”
Me: “I’m sure. I’d rather die in my bed.”
I have a very unhealthy fear of the hospital. It’s on my list of counseling issues. I’m not managing my health great right now, with my anti-hospital stance. Please pray for me.
I like to post at least once every week and a half or so, but pneumonia seemed to silence me a bit over the past two weeks. Having said that, I do believe that God has continued to minister to me in some mighty ways. But I tend to have a great deal of amnesia regarding my really sick times (like when chronic illness is layered with normal illness).
I had an interesting conversation with God recently, where God seemed to be telling me that my encounters with Him don’t always have to hit my cognitive realm. Words that He speaks to me, scriptures that touch my heart, and heart lessons that emerge in the moment of deepest sickness and despair: All of these experiences can be simply for the moment. If I cannot remember them later, it’s okay. They are still imprinted on my spirit, and they still leave a lasting mark in a place deeper than my mind. What a freeing realization! Some Spirit encounters are simply for me, the Beloved Child of God.
For me, this realization holds great power, as I struggle with an impaired brain. It also allows me to see God’s goodness and love of those who cannot comprehend higher forms of thought, and how God ministers to each of us in our own place of need, on our own level of understanding. I am actually convinced that some of my sweetest moments with my Lord may not be communicable in word, written or spoken: And how sweet that God would give me a glimpse of Himself just for me!
I am aware that this is an incredibly rambling post, and that it has very little cohesion. This is how my last two weeks have been for me. I have bits and pieces of memory, with big black holes because sometimes it seems that our brains like to spare us the gruesome details of suffering after the fact.
But I thought something was better than nothing. So here’s my something. Hopefully, soon, my writing will be up to my “normal” level again, whatever that is!
God is good: He is good in our normal, in our best moments, and in the deep, dark depths of our suffering that our brains try to erase from our conscious recollections. God is faithful, and His presence has been my strength through the valley of the shadow, which seems like I place that I have been frequenting lately. God prepares for us a table in the presence of our enemies, even when our enemies seem to be sky high in all directions. And when we can do absolutely nothing for ourselves, we can trust that we are held fast in the hand of the most loving, most powerful Father we could ever imagine. Let us rest in that truth, in our highs, in our normal, and in our rock-bottom-scraping lows.