One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Sunday, April 15, 2012


      Recently as I was being wheeled through the airport toward my plane, I got a lot of very, very odd looks. First off, I am dressed in Capri’s and a mint green tank top, over which I am wearing a beautiful filigree sweater. I have on cute and well made shoes with stitching all over them. A black coat that is carefully cut to accentuate my size fourteen body – which everyone keeps saying looks like a size ten (the advantage of being tall and having my weight carry all over) covers the outfit. I have a large red and black backpack balanced between my feet. I have on make-up and to look at my face you might think I am in the glow of health.

                As I am briskly whisked away toward my plane, I can nearly hear the running commentary on those who notice me.

                “She is sick? Yea, right! She just wants a free ride and first crack at the seats on the plane.”

                “Really? What could possibly be wrong with her?”

                Of course, the contrast I make with my fellow passenger doesn’t help my case much. A wonderfully Southern elderly white woman dressed in the requisite old lady suit balancing a large hand bag on her knees is chatting up our wheel chair attendant with the ease of any well breed Southern woman. Even I am thinking, “I could have walked, right? What IS my problem?”

                This, you see, is the problem. Even though I can appear on any given day as a robust and healthy forty year old woman, it is, in essence, a lie. I am reminded of this as I place the face mask I have bought for the plane ride snuggly upon my nose trying to seal out any reconstituted air that my attempt to flow into my lungs. A simple cold to the sweet twenty something on her way home for spring break could develop into pneumonia in record time when my body gets the exposure. My immune system just isn’t up to the task of fighting off infection.

               After boarding the plan first, I whip out my antiseptic wipes and begin to wipe down the tray in the seat in front of me. My arm rests and any surface that isn’t covered with cloth quickly follows. You should have seen the looks I got as passengers began to file onto the plane. Finally, a brave single traveler takes the aisle seat leaving me by the window with the middle seat empty between us. He is smiling at me and more encouraging than most others I have spotted in the terminal and so I lean in and share in a stage whisper,
                "All these people think I am protecting them from me," he begins to laugh and parrott me as I say, "When I am protecting myself from them!"

                We giggle conspiratorially and he slips his carry on briefcase between us on the seat. Catching on I slide my purse onto the seat as well. He winks at me and we successfully prevent any other passengers from intruding on our space. We spend a beautiful plane trip with room to spread out and a little peace and quiet for us both.  
                This generous man’s understanding aside, most of those who caught eye contact with me showed me fear. It was a small taste of what those with AIDS may face when their illness is revealed. It makes me feel dirty and with the mask on I find it suffocating at times.

                Even those who share rides with me between planes or on concourses who are polite enough to ask about my condition – or rather bold enough to find out if they might catch what I have – are difficult to deal with. I can throw out words like Neurocardiogenic syncope or dsyautnomia or Autonomic Autoimmune Dysfunction and I know they will mean nothing to the inquirer. It usually stops follow up questions which is good because they make me feel weak and silly and I just don’t seem to have the energy to even explain.

                Some Southern Elders are more persistent than others. I end up trying to explain what happens to a body whose autonomic system doesn’t function properly or how dangerous re-circulated air is to someone with a compromised immune system. Then I get those looks of censure. Those looks I reserve for my son when I catch him trying to ride the banister down stairs. Their frowning faces say, “If it is dangerous, then what are you doing in an airport?”
                  And how to explain that? How to explain that my mother died and I missed her memorial service three years ago because I was bed ridden? How do you explain that sometimes being held by your sister and mourning your mother brings the painful healing that feels like a branding on a wound to make it clot and yet, clot it does?

                  How do you help someone come to the realization that you did…if I am going to die doing something, anything – better it be in search of my sister’s warm touch, a chance to meet my niece and nephew and reconnect with my brother-in-law and other nephews? How do you explain that I have to see for myself that my mother isn’t there? She isn’t cooking. She isn’t crocheting. She isn’t there. She is really gone.  

                Finding this knowledge and gentle warmth of my sister's arms is worth any pain or discomfort that a trip might garner.
                  I have talked to my sister a lot about looking one way and being another. Interestingly enough, I have found a correlation between her and I in this way. Since my adoptive mother’s family is African American and I am white, I have learned firsthand, especially on this trip, how my sister’s looks often determine how other’s see and treat her. The difference is that censure given to me because I might be faking an illness hurts far less than when a driver jumps out of his car and calls my sister a “n#$ger.”  
                Sick can be made well. Once well, the perceptions of others will matter little.  For my mother and my sister’s family, skin color is and was for life and there will be no cure for the scorn they will receive until racism finds a way to loose it's hold on so many within our society.
                  Even having suffered that reproach all her life, my mother gave a a lost thirty year old woman who had no family, no mother, and gave to this white Southerner the security and example regarding what mothering really is. Thinking on this as I am wheeled away from my sister, I see her eyes that remind me of our mother's and hold them until they are beyond my site.

                Left alone with another airline attendant, I dry my eyes and realize - one day I may be well and then walk unnoticed or bothered through this airport.  I understand now, after spending time with my family that they may never find a place where they aren't judged by the color of their skin.

               And for those who continue to think I am crazy to risk my health. I leave California knowing that I would suffer a ride in a wheel chair, a face mask; meticulous cleaning of my surroundings and more to see and know for sure my mother is gone. To paint Sissy's nails and play cars with Adrian, to talk to Robbie about television and dance and tease Kevin about doing dishes, to give Jon an opportunity to try abalone and to go shopping for shoes with my sister. When I die, what would I ask? Did I or did I not spend time with those that are important to me, those that I love?

               So let them look in ATL and LAS and SAN and PHN. Let them whisper and I will dig deep and smile and try to give back what I as given by my mother - unconditional love and acceptance superseding prejudice and preconcieved ideals. I am my Mother's daughter.

1 comment:

  1. It is amazing how we all connect to those who mean so much and what we are willing to endure as a result. I am glad that you braved the trip to be here, it means the world. And it is good to have a piece of CoCo live through you and know that I can visit it there. I love you.