Come, come, whoever you are,
Wanderer, worshiper, lover of leaving.
It doesn’t matter.
Ours is not a caravan of despair.
Come, even if you have broken your vows A thousand times.
Come, yet again, come, come.
~Inscription on Rumi’s tombstone
Empathy, as the Merriam-Webster Dictionary defines it, is the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this. I think the last line, the capacity for this, is the most important and the hardest to achieve. Before I was paralyzed I never really thought about paraplegics, quadriplegics, or really any other disability. I knew disability existed, I knew people with disabilities, but I never truly took the time to learn to empathize. I was never unkind or hurtful, I just maybe thought about what it would be like to be disabled for a fleeting second and readily returned my attention and focus to probably my biggest worry at the time, which pair of shoes I should buy. I thought the problems I had were huge and really nothing could compare. I was young.
One of my first memories of rehab is sitting around a large room with fellow patients tossing a ball. I assure you, none of us found this amusing. The therapists gleefully encouraged us to randomly toss the ball around the circle...I think the randomness was supposed to be the fun part. It was not. For a second, after I threw the ball, I stepped outside of myself and looked around the room. I saw college students like myself, young mothers, young fathers, uncles, aunts, doctors, lawyers, best friends, grandmothers, and grandfathers. I scanned every one's eyes. I saw bodies struggle to toss a light, rubber ball and eyes quietly fill with tears as the once capable hands, timidly released the silly toy. The pain living and breathing behind the blue, green, brown, or hazel exterior was common. Grief, fear, gratitude, and humility flowed gently with the tears. Just weeks before, we all were free. Now, even though life twinkled ever so faintly in each of our eyes, the bleakness of confinement, the despair of feeling trapped, took over with a vengeance. As I sat, I slowly felt the ripples of empathy. My thoughts turned to our commonalities, not our differences. We were trapped together, all equally and passionately sharing the desire to be free.
Day by day feeling physically trapped by my body slowly eased. I learned how to do most of the things I could do before. Some took much more time than others, but slowly the physical freedom returns. However, confinement remains an ominous presence. My body is always in charge. It makes my decisions for me. If I want to watch television, the position of my body and duration of time I rest on my side and when I turn to relieve pressure must all be considered. Food choice is a luxury...trust me, jalapenos dipped in nacho cheese at a football game is not a wise one. I am in charge of controlling my bowel and bladder, my brain no longer has control. I think carefully about what I eat and drink. My legs don't have any feeling, so my thoughts constantly stay with them, protecting and caring for them. I have to consider their well being in every situation. I must remember to prop my legs up and relieve pressure all throughout the day. Stretching is the key to proper alignment and must be done with diligence. Clothing choices and shoe choices are limited and difficult. Ramps and bathroom access and ease of parking all must be carefully planned before attending the mall, a lunch, a friend's party, church, a wedding, or a funeral. I could continue. Awareness of physical limitations sneak in and dominate my mind for days. These are all things I live with daily. I sometimes feel like I am going crazy because I constantly talk to myself, reviewing my check lists. There are days when the loss of freedom is more apparent than others, but mostly, with a lot of practice and patience, these check lists become second nature. Most days, I push forward with ease.
"I just want my freedom back." This is a text I received from my dear friend Michael this weekend. Later, he sent another message expressing his eagerness to drive. He understands the way out of his physical bondage. He is pushing forward and willing to head out the door, check list in his head, and attempt a giant stage of freedom. Driving awakens a deadened and defeated part of the spirit. To regain the ability to hop in a car and go after months and month of relying on rides, drivers, and other forms of transportation is simply priceless. The day I picked up my newly fitted, hand control car and pulled down on the control as it lurched forward stays permanently in my mind. I finally stopped lurching, found the express way, rolled down the windows, filled the car with music, and had the ride of my life. My hands can still feel the steering wheel. Later, I drove out to see the hens and Eileen and everyone jumped in the car and we drove and drove and drove. Eileen said, "Oh Sarah, don't you just feel like yourself again? And Sarah, you are just you when you are driving, no one has a clue you have a disability. " She put my exact feelings into words. For the past year, my wheelchair, physical limitations, and variety of needs presided over every moment of my life, but this day, I was free of all of it. I didn't have to even think about anything, but the road and safety. Driving and mastering folding, loading, unfolding, and unloading my wheelchair spurred a furry of steps towards independence. I finally had the ability to practice so much more. I secured a great job that I loved, moved into a fun apartment with a great roommate, and was a tiny bit excited about life. Hope resurfaced for a bit, even started to swim, but quickly it sank. My illness started and that feeling I loathed, confinement, ferociously roared its way back. But this time, I couldn't master the physical challenges, the infection was in charge. My job became a luxury and extreme illness became a way of life. I spent countless hours in my bed and in my apartment. I would fight against the clutches of this nasty and persistent blood infection and venture out, doing my best impression of a thrilled escaped convict. Solitary confinement is brutal and losing control over the body is dehumanizing. I fought feeling trapped constantly, until one day, after years and years of fighting a losing battle, I decided to surrender. I risked my job, my doctor, my family, my friends, and mostly my sense and need for control. I just let go and gave in and listened to everything my body needed. When I started to allow my body to be in charge, feed it the food it needed, give it the rest it craved, and advocate to find it the right medication it needed I started to notice how much control I actually gained. Sure, I had to become an advocate for myself and care for myself in ways I just didn't want to, but slowly I started to see how forward momentum and healing would become a way of life. Yes, I have to be healthy and strong and wise, but I am not complaining about any of these things. These are all things that free me to live longer and better. And as I made the lists I needed to make in order for events and appointments and coffee with friends to go smoothly, instead of resenting this effort, I quickly discovered I became more aware and more present. Because I put so much energy and thought into my appointments and events, I started thinking about others and seeing how important their check lists and needs are. Sure, my stuff might be about my disability or an illness, but who knows what someone else is carrying. I really don't have a clue. And when I quieted my mind and really thought about another person's struggles and let it sink in deeply, I awakened to the idea that we are all trapped. We all feel confined by something or another. We all feel a deep and longing desire to be free and to be ourselves. We want to rid our minds of others' opinions, we want to choose where we go and what we do, we want to love who we want to love, and wave our own personal freak flags with pride. (I stole the term freak flag from the Luke Wilson character in The Family Stone.) But, instead of feeling like we are driving and have the wind rushing through our hair, we roll up the windows, turn on the air conditioner, put on what ever armour we wear, and assume the position of perfection. We show the world what we want it to see. Instead of confessing something is just too hard or too much because of a hectic week, we cover and smile and nod and exaggerate just how happy we really are. A life in a wheelchair or long term illness creates a physical and emotional sense of vulnerability, that at first seems harsh and cold and ridiculously unfair. But, as time goes on, an awareness of others and their vulnerability heals it. I see everyone hides behind something and presents the picture he or she wants to show the world. I see how concerned everyone is about shattering an image or hearing a negative word. I see forced smiles and relationships lacking any real depth because the surface is only what is important. I see everyone taking others' moods or needs or feelings personally and further trapping themselves into a tunnel of insecurity. And once I started to see the suffering and self loathing we all share, I saw my wheelchair as a ticket to freedom. I couldn't worry about things like these anymore. I had to do what was best for my body, my spirit, and my mind. If people criticize me or don't understand why I have trouble or emotional turmoil over an issue or a place, I can't spend time worrying about it. I abundantly communicate and tell everyone why I am late or forgetful, purely to help with understanding and empathy. The more we understand and see ourselves in each other, the more peace we share. We all feel trapped. We all feel less free than this person or that person. Celebrities have it all, don't they? The key is though, our limitation to see ourselves in others is exactly what traps us the most. Physical limitations will always be there, for all of us. But the emotional confinement, the protection of our ego, and the delusions of our own imaginations of what others are really thinking, feeling, or intending, we can extinguish all of these. We can do this by seeing ourselves in everyone else. It is as hard for me to ask for help in my wheelchair as it is for the able bodied person to ask for help. The guilt and pain and love and fear and insecurity I feel is the same everyone feels. It is all the same. There isn't a hierarchy.
These last few weeks I felt so tired and worn out from my cold and my lists and my life. I had events to attend that wreaked emotional havoc. I felt alone and misunderstood. I started to feel trapped once again. But, then I remembered I was once misunderstanding and mistreating. I was once not seeing someones pain or suffering as my own. I freed myself as I started to see the similarities. I knew the trappings of anger, protection, and pain were to blame for the misunderstandings. We all have habits and tools for self preservation, but sometimes these tools and hardened habits become inhibitors to true and honest empathy. We must first, have the capacity. Empathy is a practice, a way of being. It doesn't come in moments here and there, it is a way of life. Sometimes we might forget and fall prey to our most immediate and strongest reaction or emotion or trap, but if we take a breath and see the handcuffs we are about to lock with our harsh judgement and stinging opinions, we save ourselves and are quickly on our way to freedom. My wheelchair is just an obvious sign of insecurity. It is all of my weakness on display. I may not have a choice about the physical imprisonment it provides, however manageable, but I do have a choice about the emotional constraints. Because where I can see pain and suffering in another, I can also see forgiveness and hope and humility and love. I see we are all yearning for the exact same desires. We all need to be free from our disability to see others as ourselves and be willing to offer a caravan of forgiveness and hope to anyone and everyone who is willing and wanting to join. Because when we let go of our hard and practiced exteriors and surrender to our commonality and bear witness to our collective pain and suffering we see that contentment and joy and freedom rise from the ashes and we know why the caged bird sings.