LeAnn Cramer
If I had known that this elevator ride would be the end of all I had known, I would have taken the stairs. Then again, that would have left Troy upstairs in the hallway, unable to navigate into the elevator in his wheelchair. So, I ensured he was safely ensconced in the elevator headed to the main floor from the second.Why were these appointments necessary? Do they understand how overwhelming leaving the house is? What did we gain by coming, I wondered.
Troy’s diagnosis of Amytrophic Lateral Sclerosis continued to devastate our dream of traveling once the kids were out of school. One blow after another, one loss after another. Sweat rolled down my back as I breathed in the stale air of the elevator, my shoulders tight and stooped from the invisible weight of responsibility. I ached at the thought of the laundry needing to be washed and putting Troy to bed before I could sleep. My lower back is persistent in shouting its displeasure at the repeated lifting of a body heavier than my own.
“At least I can get prescriptions filled before we leave,” I said to Troy as we waited to arrive on the first floor. His hair is defiant today, refusing all efforts to tame it. ALS has made him unfamiliar to me, his face is slack, and he has lost the perpetual tan he always wore. We do not spend time outside anymore.
The elevator ground to a halt, jolting me off balance, and the door opens to the sound of busy chatter. Inhaling the cooler air, I detected a faint hint of urine; Troy’s catheter bag needed to be drained. As we entered the lobby, I can see that the line at the pharmacy is considerable. It will be difficult to navigate the large wheelchair through the line, so I give him the option of waiting near the entrance-holding my breath and praying he would agree.
Nothing is easy in our lives, even the smallest of tasks become impossible when you have not slept longer than four hours at a stretch for the last two years and a 380-pound wheelchair is your constant accessory. He agrees to wait, so I position him where he can see me, out of the path of the swishing automatic doors with his back against the wall. Being unable to move terrifies him; I do my best to allay those fears.
I enter the pharmacy, eighth in line to pick up. Hushed voices describe dosage changes and side effects. I am oblivious, focused only on the quiet minutes that I am alone to pretend that my life is normal. In these few minutes, my time is my own. My turn arrives, and I pick up the medications that help him to sleep. If he sleeps, I get to sleep. It feels selfish to obsess about sleep when his loss is greater, but I indulge for a moment. I do not remember what it feels like to not be weary in every cell of my body.
Returning to the lobby, I can see Troy’s eyes are bright with tears. He needed me and could not get my attention; his voice had been ravaged by the disease. His body is trembling, and I can hear the tapping of the metal footpad of his wheelchair on the ceramic tile. The tremors become more pronounced when he is agitated, and the tapping becomes an agitated staccato.
I kneel before him, maintaining eye contact to let him know that I have returned and will fix whatever has upset him. His inability to speak does not stop us from communicating, we have created a process of our own. I recite the alphabet, and he looks at my right hand when I land on the correct letter. It is not fast, but we arrive at enough letters strung together for me to guess that he was upset at the woman staffing the check-in counter. Sitting exhaustedly in the corner of the lobby, the tremors that plague him had become insistent. The tapping on the tile had caught the notice of a woman waiting at the counter. Did she not turn to see that it was a young gentleman in a wheelchair? I will never know, but the polyester-clad brunette behind the counter felt it necessary to address her concerns.
“Would you knock that off?!” she demanded. The lobby was crowded, and her voice was at the elevated level required for my husband to hear her distinctly.
Overwhelming grief flooded over me, for the beautiful soul whose body was robbed of all dignity and control. Grief that he had not been recognized as someone bravely struggling to survive. Grief for his embarrassment, for the blatant disregard for him as a person. Those women had only seen the unsightliness. The drool at the corner of his mouth, and the now permanent tilt of his head to the left. The tapping on the tile raced faster, the more stressed he became. Society looks just over the left shoulder of those who are too uncomfortable to look at, refusing to acknowledge their right as a human to be treated with respect. Social niceties become unnecessary; those are reserved for those who are deemed deserving.
I have seen it myself frequently, within the community of persons with disabilities. No one sees the beauty; they look away. And it hit me with the force of a train that we had become the “unseen.”
Troy could see on my face that the grief I was experiencing was rapidly becoming outrage at the injustice and callousness of the insult. “Car,” he spells. He has been humiliated enough and has no desire to be here when I address this. Fair enough.
We made the slow trek to the car, fighting to squeeze between our blue wheelchair-accessible van and the silver Audi parked too closely beside it. Of course, there was never enough room to position his chair so that he could be safely lifted. Slowly lifting and pivoting his uncooperative body, I get him settled in the van and started it so that he could enjoy the respite from the August heat.
“I’ll be right back,” I say.
I did not wait in line; my infuriation would not allow that. Aggressively I crowded in and stared at the middle-aged woman behind her counter. Her floral polyester blouse was appropriately buttoned up and her slacks were perfectly coordinated; she was the picture of a consummate professional. She did not recognize that I was with the “nuisance in the corner” but she could feel my rage and turned to me with an attitude of superiority; ready to address my complaint.
“How could you?” I all but shouted. “Could you not see that he was disabled?” She finally made the connection.
“It is my job to ensure that patients are comfortable and satisfied with our customer service.
The noise was annoying her, and I took steps to correct that.,” she stated unequivocally.
“Annoying HER??? I shouted. “That man sitting in the corner got the news at age forty that he would not live to see his children married or his grandchildren born. He would never play softball again, dance with me to our favorite song, or hug his mom. You can see that by looking at him, but you were concerned that SHE was annoyed?” Patients in the lobby slowed their progression, curious about the acid tone of my voice.
I could see that she had not stopped to think before she responded to the complaint nor taken the time to understand the situation. Her eyes would not meet mine, and there was defensiveness in her posture. My voice dropped to an agonized whisper. “This is a medical facility, the one place where we should be safe. And where people should understand that an illness or disability does not make you less. Your complete lack of respect for my husband’s dignity, your willingness to humiliate him in a crowded lobby, and your lack of empathy is completely unacceptable to me.,” I say as I turned and walked through the automatic glass doors.
I could see her look of shock in the reflection of the glass door, her face a mask of mortification. I did not care, I hoped she hurt in the same way she had hurt us. There was a time that this degree of callousness would have appalled me, but that time was long gone.
I returned to my worried husband and taking his limp hand in mine, I laid my head on his shoulder and cried with him.
We spoke with her supervisor, and received a perfunctory apology letter, but none of that mattered. We had crossed over to the other side in the shadows where people that society pretends not to see reside. There is no coming back from that.
