Age Is in the Eye of the Beholder
Those of us living with rheumatoid arthritis often feel older than our years. The creaky, stiff, and painful joints inflamed by this condition are more typically associated with elderly people than with adults in the prime of their life. Most young people have the luxury of taking mobility for granted. However, I was diagnosed with RA at 22. At an age when most people still haven’t lost their belief in immortality that remains from their teenage years, I was faced with the realities of a lifelong, degenerative disease. There have been days when I’ve had to use a cane to walk, when I’ve had to use assistive devices that can be found in AARP catalogs, when I’ve had to turn down sex with my husband due to a painful hip. These are not the experiences one expects in their twenties and thirties, and it’s easy to feel disappointed and resentful.
While it’s natural and normal to become frustrated with the “raw deal” that rheumatoid arthritis can seem like, I recently had an experience that reminded me that everything is relative. My grandmother is 98 years old, and I’ve been lucky enough to live in the same town with her for 36 years, a decade of which we lived across the street from one another. A world traveler, activist, volunteer, and mother of five, my grandmother has led an extraordinary life. Not only has she had a full and long life, her mind has remained clear and alert until very recently, and she has continued to maintain a keen interest in the world around her in her elderly years.
People have frequently commented on how lucky my grandmother was in retaining her mental faculties for so long. Yet, I haven’t been so sure. While it’s true that she’s been able to enjoy crossword puzzles, books on tape, and dialogue with friends and loved ones for far longer than most people can reasonably expect, her sharp mind has also left her keenly aware of all that she has lost: her husband of 60 years, her hearing, much of her eyesight, her balance, her physical strength and stamina, and eventually, her mobility. She has been saying for years that she’s ready to die, because she is so aware of all that her mind still wants to do, but that her body will not allow her. While I’m a long way from anticipating my death, I’ve been able to relate to this loss she feels. Although we are 60 years apart in age, there are times when my body will not allow me to do the things I long to do.
In the past few weeks, my grandmother has had a series of strokes, which have zapped her of what remained of her physical strength. When seated in her wheelchair, she requires a pillow under each arm to prevent her from listing completely over. Her head hangs over, and she is only able to say a few words. Yet her intense gaze remains, as well as a half-smile that still makes appearances.
She is no longer able to provide the suction necessary to drink from a straw, and taking sips from an offered cup is often a messy proposition. To problem-solve this during a recent visit, I placed a straw in her drink and put my finger over the top of the straw, which formed a vacuum to hold some of the liquid within. Placing the bottom end of the straw in her mouth, I then released my finger from the top of the straw, sending the sip of beverage onto her tongue. This worked really well, and she eagerly took drink after drink from the tip of the straw. While this method was spill-free, it was also slow in delivering the contents of the cup. After a couple of minutes, my index finger that I was using to cap the top of the straw until it was safely in my grandmother’s mouth began to stiffen. I sometimes have “trigger finger,” an-RA related condition in which inflammation narrows the tendon sheath, causing fingers to become locked in a bent position. As I was giving my grandmother sips to quench her thirst, first my index finger began locking, and then the other fingers holding the straw followed suit. A sharp ache set into the wrist of my hand that was holding the weight of the cup. For a moment, I was frustrated, thinking, “I’m only 38 years old, and it hurts to hold a straw and a cup.”
In that instant, my grandmother’s gaze locked onto mine, and she smiled at me with a force that burned through my self-pity. Her eyes shone out from a face encased in wrinkles, and the juxtaposition of her body next to mine reminded me of how very young I actually am. I may not always be 100 percent mobile, but I am always able to hold my head upright, I always have the strength to drink from a straw. Even though the process of repetitively placing my finger over the cap of the straw was causing my fingers to painfully lock into bent positions, I was still able to move them enough to continue providing liquid nourishment to my grandmother. It was such a tender, heartwarming moment, in which I was able to provide some care to her after the countless times she has cared for me over the years.
My ability to move my hands, however cramped or painful they may be, is still a gift. While I may often feel older than my 38 years, I have a long ways to go before I am truly demobilized by age and RA, and reveling in the abilities my body does have feels so much more liberating than dwelling on how I would prefer things to be.
When was your last flare?