No I don’t mean the four-letter swear word, though I’ve said that too many times to count in the past few weeks. F is for fall, one of those key medical metrics that hospitals, medical teams, and insurance companies care about. The F word is tracked. The F word is talked about. The F word matters in medicine. The F word opens up medical doors, insurance approvals, and possibilities for patients.

Obstinate headstrong girl

I knew this somewhere in the back of my brain, but in my every day vernacular I refused to say fall. As I described my brushes with gravity to my medical team I avoided the F word, falsely conveying a level of wellness and stability that I actually don’t posses. I didn’t want to say fall because that was bad, fall meant medical paperwork and time consuming things. Fall meant I was sick. Fall meant I was getting worse. Over the past ten years, I formed this association in my brain: fall = bad. So, I didn’t fall, nope not me.

Ten years ago when I was diagnosed with multiple sclerosis my insurance at the time dictated my pharmacy of choice was Walgreens. And not just any run-of-the mill chain drugstore, no I would interact with a special subset of their pharmacy, a world I came to know as specialty pharmacy, aka fancy expensive pharmaceuticals mailed to your door. I called Walgreens Specialty Pharmacy to fill my prescription for the first Disease Modifying Therapy (DMT) I was on and the employee on the phone inquired, “have you had any falls?” Brand new to chronic illness and with no symptoms to report, I scoffed and said no. Each month when I called to refill my DMT, it was the same question with the same answer. It became a running joke with the infamous Maggie. If I tripped, dropped something or slipped in the snow Maggie would ask, “did you call Walgreens?”

Why the F word is important

I now know that in the MS world, number of falls is a direct and, dare I say, easy metric to gauge health, wellness, vitality and function. What was never conveyed to me by the person asking the question was why they were asking me that question first in their patient encounters. No one took the time to share why they cared if I had fallen but, to be fair, I didn’t ask. Nobody explains the critical whys so it is left up to each individual to figure out what the heck people are talking about, why they care and how it impacts us. Falls are a determinant of health. Falls affect your independence. Falls sum up balance, agility, strength and endurance in one metric, in one question. As my mobility decreased and my disability increased, I realized why they were asking about falls.

A graceful descent

Chatting with Occupational Therapy (OT) and Physical Therapy (PT) in the past few days and over the course of my three recent hospital admissions, I refused to say fall. I have always prided myself on my strength and flexibility. As my legs began to fail me, my flexibility stayed consistent. I don’t fall and snap like a twig, I fold like an accordion. I’m not suddenly tripping and falling. There is a moment, a beat, a breath of awareness where I know my muscles can’t hold me anymore, I know I am going down. More happens in that split second than I can begin to convey but as one OT specialist said, “You gracefully descend.” But let’s be real, let’s finally be honest, I fell, I fall.

Even last year when I collapsed from my first round of chemo, my doctors, nurses and EMTs were amazed I hadn’t hurt myself when I became instantly paralyzed. They were fine with the graceful descent definition. As I worked with home PT the past seven months however, I consciously avoided the word fall because that meant more paperwork and Safety Event Reporting System (SERS) reports from my therapist and time away from actually helping me with PT.

Let’s be real

But this brutal, awful, terrible February has forced a come-to-Jesus with that term. Even though I haven’t been hurt, hit my head, sprained my ankle or received anything more than a small bruise, I’ve fallen. And those falls led me to be back in the hospital. Those falls are a metric that might mean insurance approval for a skilled rehab center. I should have been more clear, more honest about my ability, the falls that took place, and my fear of falling when I was alone. I had to come to terms with the F word.

My February learning curve

After I was discharged from the hospital the second time, I went to my mom and dad’s house as they have a one-story home. I was steps away from a bathroom, I had my office set up at the dining room table, and I had my mom brining me meals and coffee. I am grateful for my parents, their endless generosity of time, money, and resources, as well as their love and companionship. But I made the mistake of assuming “discharge to a safe place” or “discharge to my parents” was the same as independence and discharge to my own home. They aren’t the same thing. My quest for independence and being self-sufficient and safe from a medical perspective does not mean my mom and dad must take care of me. The burden of my health and care does not fall on their shoulders. I’m still learning as I go here. Be sure you understand the question being asked. Be sure you understand your own needs. Be sure you are clear what your medical goals are and be sure you and your care team are speaking the same language.

I tell this next story with equal parts humility and overwhelm. Much like my revelations on chemo and body shame, there are realities of chronic illness that aren’t pretty, they are raw and painful. I lay bare my pain and degradation so others know they aren’t alone.

While recouping at my parents’ house, I enjoyed coffee in the morning and Ted Lasso in the evening. I took my medications, followed doctor’s orders and had virtual visits with my care team. The mood shifted for me when I needed to shower. My parents have a lovely walk-in shower with a one, maybe two-inch metal lip to cross. I had a shower seat. There is a hand-held sprayer. I was prepared. My mom came into the bathroom with me to make sure I was safe. I took my top off but decided I would take my pants off once I was in the shower. Looking back you have to wonder at the weird decisions your mind makes.

Insurmountable barriers

I couldn’t get over that metal lip. My leg refused to lift. I was precariously balanced, willing my hip flexor to work, my knee to lift, my foot to flex to clear that tiny, miniscule metal barrier to bathing. But no amount of mental power would make it so. I asked my mom to lift my leg. In that split second of her lifting one leg, my standing leg buckled. I had that moment of clarity and said, “I’m going down.” I descended to the shower floor. Please picture me, half-naked sprawled half in the shower, half out. I lost any control over my emotions and curled into a ball. Half-naked and half in the shower, I bawled, guttural tears of pain and loss. Profound despair over body grief, loss of mobility and the death of independence. Everything in that moment was big, insurmountable, and overwhelming. I said, “This isn’t where I thought I would be at 41. This isn’t the life I was supposed to have.” Through gulps of air and moans of defeat I muttered, “I don’t know how to live like this.”

Eventually, I wiggled the working, moving parts of my body to get out of the shower and onto the bathroom floor. I’ve had enough of these really hard moments to know that alongside pain, is the pleasure of release. When you think you might burst from all the feelings trapped inside you, there are two options 1) an orgasm and 2) a good cry. Clearly in this circumstance, option 2 was my only option for the release I needed. When things get hard, you have to laugh. Even in the darkest of times, their is comedy in tragedy. My mom and I were trying to problem solve how to get me off the floor, the shower long abandoned. I still don’t have a shirt on and I just sobbed on her shower floor. I think we both looked at each other and laughed at the absurdity of the situation.

Home sweet home

After a week at my parents, I returned home. We added a handrail by my downstairs bathroom and bought a bedside commode. I wanted, even though it was hard, to be in my own beautiful house — even if only on the first floor. My mom acquiesced, though I think she knew with her mom intuition exactly what would happen. I spent the night alone. I was scared. I had the worst night sleep. I was in constant pain. I could barely grab food from the refrigerator, let alone make myself a meal. But the fear of falling was overwhelming. Wanting my independence so badly, I needed to test how I would do, what I could do. But one day and one night was enough of a test for me to know I failed.

A second fall

The next day, trying to get up from the couch, I fell again. This time, cell phone within reach, I texted my sister and she came over. She deadlifted me off the ground and onto a chair. Damn, she’s one impressive woman. Just to paint the comically tragic or tragically comic picture once again, my nephew was along for the ride and witness to this whole escapade climbing on my rollator like it was the greatest jungle gym he’d ever seen. So while we’re making a plan and she’s deadlifting, she is multi-tasking my three and a half year old nephew’s questions.

• Him: “Why is Aunt Carolyn on the floor?”
  • Nicole: “Aunt Carolyn fell and she needs my help to get up.”
• Him: “Why can’t she get up on her own?”
  • Nicole: “Just like I help you sometimes, I am also helping Aunt Carolyn.”
• Him: “Aunt Carolyn, why are you crying?”
  • Nicole: “Sometimes adults need to cry too.”

My sister has the tremendous gift of making everything seem normal. Amidst a crisis, my world seeming to crumble, she is lifting me up, helping change my pants, grabbing me food, cleaning up my kitchen, remaining cheerful and asking what else I need. And doing this all with a demanding three-year-old asking a torrent of questions about the bizarre scenario he’s witnessing.

Use the F word

My learning curve over the last few weeks has been intense. Just when I think I’m a medical expert, I learn new things about my care and my advocacy. There are no days off in chronic illness. I do more with pain, fatigue and disfunction than anyone will ever witness, know, or comprehend. For as much as I show, there is more that I hide. But I learned I must admit my deficiencies and fears. I need to be clear about my medical goal of independent living. I need to ensure my care team is aligned on what my goal is and how we get there together.

So I lay bare my fears, my loss and my struggles. February has been brutal. I was knocked back to the starting line. So here I am knowing I can get better and stronger and recover once again but damn it if I’m not angry about it. I’m mad I have to be so strong. I resent the fact that I have to spend precious energy advocating for my care. I’m embarrassed at how much I need my mom, my sister, my village. I am sick of being sick. But despite all that, I will keep trying to get better. That is the only course of action. I refuse to give up.

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