Nevertheless, I Persisted
As I’ve gotten older, my fear of heights has grown stronger. The first time I noticed it was in my college years, when some girlfriends and I decided to add some adventure to a day spent at the river by crossing a train trestle. I had no choice but to look down, as I needed to ensure my next step was on a wooden railroad tie and not into the abyss between the beams. When I was about halfway across, at the highest point over the swirling rapids of the river, I froze. The distance between my feet and the rushing water and rocks below felt immense and treacherous, leaving me feeling powerless in comparison. I knew I had to either move or spend the night up there, but my body wouldn’t obey my command to walk. Fear winning over my body, I ended up crawling across the rest of the trestle on my hands and knees.
Since then my acrophobia has only intensified. Therefore, when the non-profit that I'm on the board of decided to do an "Over The Edge" fundraiser in which participants rappel down a building after securing pledges from friends and family, I was set against attempting it myself. Instead, I talked my husband into doing the rappel, and I solicited pledges on his behalf. He is an arborist and tree climber, so he made the 60-foot rappel look easy. Watching him glide and bounce his way down the building I thought, "Maybe I could do that."
Flash forward a year, and I was sitting on the ledge of a building, being told by a technician to rise to my feet and lean back. Every inch of my body rebelled against his instructions. However, in spite of all the messages flooding my system and telling my body to freeze, this time my command to stand up, on a ledge so far above the ground, was heeded. I stood, I leaned back, and I commenced rappelling down the side of a building in spite of my fears.
While acrophobia can have a powerful effect on me, it is not my most frequent fear. Spending most of my time on solid ground, the fear that most often strikes me is not that my body will be destroyed in a crash to the ground, but rather that it will destroy itself from within. I have rheumatoid arthritis (RA), an autoimmune condition in which my immune system attacks healthy joints and tissues. A degenerative disease, RA can cause permanent joint damage, deformity, and, in rare cases, even organ failure.
For the better part of the 17 years I’ve been diagnosed, I’ve been able to live a quality life in spite of RA. I have an Orencia infusion every four weeks and take Plaquenil daily, I eat a healthy diet, I make sure to carve out enough time for sleep and rest, and I get enough exercise to keep my body and joints as healthy and mobile as possible. In spite of these efforts, I do have flares of symptoms, which can make it incredibly painful and exhausting to do everyday tasks such as working at a computer, taking out the garbage, or even having one of my kids sit on my lap. When I’m having a hard time performing simple tasks while in my thirties, I fear what old age will look like for me.
The RA fears don’t stop at imagining the potential tarnish on “my golden years.” When I’m in a lot of pain I sometimes fear whether I’ll need surgeries, how much caretaking I’ll require, and how much mobility I’ll retain in the decades between now and old age. Even in the short term I fear how long the intense pain and fatigue of a flare will last. Living with a chronic, degenerative disease can be downright scary.
Yet, successfully living with this disease requires managing this fear. On one hand, a small amount of fear can be helpful and does serve a function. Keeping in mind the potential outcome of this disease can be motivating in doing all the things I need to do to stay in the best health possible, just as a fear of heights can keep me from being in dangerous situations. Fear can also help us develop plans if unwanted outcomes should occur. In contemplating a rappel down a building for charity, my acrophobia was accompanied by RA fear. What if I couldn’t hold onto the ropes? What if my hips locked up? What if I was in a flare and in too much pain to attempt the rappel? I communicated with the rappelling company and found out I could be lowered down if I encountered joint pain while on the building, and I wouldn’t have to rappel should I be in a flare on the day of the event. With these assurances, I felt ready to face my fears.
In selecting comfortable clothes on the day of the event, I decided my “Nevertheless, She Persisted” t-shirt was perfectly suited for the occasion. While this phrase has recently become a battle cry for feminists, it also resonates with my persistence in living well in spite of this disease. RA has frequently thrown off my timeline, but so far I have not allowed it to keep me from doing anything I’ve truly wanted to do, whether that be completing two college degrees, parenting two children, or, in this case, rappelling down a building.
Resilience and RA
While fear can support our survival, it becomes irrational if we let it grow too big. I’m not going to need a joint replacement tomorrow, just as I’m not going to plummet to my death from the top of a building if I’m strapped in with two separate lines preventing me from a fall. Therefore, allowing fear to whisper can be helpful in keeping ourselves safe and well, but allowing it to roar can keep us from living life to the fullest. I was terrified at the top of that building, and I did not want to look down during the rappel. However, once my feet hit solid ground, I felt a rush of strength and gratitude. My body did not freeze on that building, neither from acrophobia nor from RA. I persisted, just as I will continue to do as long as I live with this disease.
When was your last flare?