COM­ING UP FOR AIR

When they dis­cov­ered the in­cur­able can­cer in her mother’s brain, Ciara O’Con­nor thought that her life was over, too. This Mother’s Day, 17 months af­ter her mother’s death, she looks back on the years of ill­ness and re­mem­bers the woman for whom she still g

Sunday Independent (Ireland) - Life - - MOURNING SHADOWS -

When I was 20, I thought my life had fallen apart, be­cause I got ill, had to leave univer­sity early and go home. It was my mother who minded me for the next three years and dragged me through the slow process of re­cov­ery and re­ha­bil­i­ta­tion. I was a child again. She fed me, drove me around to doc­tors and phys­ios, did my chores. We spent al­most ev­ery day to­gether, both of us at home: a cu­ri­ous sym­bi­otic ex­is­tence, punc­tu­ated by my fa­ther, broth­ers, boyfriend. But al­ways dur­ing the day, ev­ery day, the two of us.

Af­ter three years, I was able to walk again and look af­ter my­self; I was al­most nor­mal. I was ready to start deal­ing with a new set of prob­lems. Life had been pass­ing me by: my friends had gone trav­el­ling, were all liv­ing in house-shares, and had started jobs. Mean­while, I had been un­der house ar­rest with my mother.

Soon I would be pro­foundly grate­ful for that time, be­cause shortly af­ter I was back on my feet, on Novem­ber 11, 2013, we would dis­cover the enor­mous tu­mour on her brain. Soon, my life re­ally would fall apart. Shortly, there would come more emer­gency surg­eries, co­mas, in­fec­tion af­ter re­lent­less in­fec­tion, and pun­ish­ing treat­ments. I’m not sure at what point I re­alised this, but she, we, would never be the same again. The com­ing years would pro­vide the mir­ror im­age of the years be­fore: still we two, bar­ri­caded at home, lives on hold, but now it would be me look­ing af­ter her. We didn’t know it then, but the heavy, con­fused steps she took be­fore col­laps­ing, vom­it­ing, into a wheel­chair in the hos­pi­tal lobby that very first day, were the last steps she would ever take. Two years later, she would be dead.

I worry about tak­ing these mem­o­ries out too of­ten, as if han­dling them runs the risk of erod­ing or di­lut­ing them, or drop­ping them and be­ing un­able to piece them back to­gether again. Some­times I am wor­ried that by re­mem­ber­ing, I will for­get.

When peo­ple who didn’t know her ask what she was like, usu­ally all I can come up with is “she was a mother”. She was one of those peo­ple who was a mother be­fore she had chil­dren. Rightly or wrongly, her world re­volved around us. She did not spend her time hand-sewing cos­tumes for school plays or bak­ing elab­o­rate birth­day cakes, but she had endless pa­tience; a spe­cial coat made of du­vet for spend­ing week­ends on freez­ing rugby side­lines. If you had asked her, she would have told you that she hadn’t fin­ished bring­ing me and my two broth­ers up. Her work wasn’t done yet. We were not ready for my mother to die.

It was not like other can­cer deaths. She did not, could not, say her good­byes, tie up loose ends, say what she wanted to say, work on ticking off her bucket list. Al­though I said good­bye to her, I’m not sure that she got to say good­bye to me, or any of us.

Brain can­cer, it turns out, does not fit into the ‘can­cer nar­ra­tive’ that we have be­come so fa­mil­iar with from films and mag­a­zines and fundrais­ing cam­paigns. It is a mix of the phys­i­cal catas­tro­phe of can­cer, along­side dementia or brain dam­age. The tu­mour took away her per­son­hood. She be­came a child, with all the con­fu­sion that goes with it. Time was mud­dled, lan­guage failed. I’m not sure that she re­ally un­der­stood what was hap­pen­ing to her. Some­times I would glimpse her through the can­cer — a phrase here, a look there, which meant I never for­got that she was still my mother.

Our home also mor­phed be­fore our eyes. The hos­pi­tal bed, a clunky eye­sore in our liv­ing room down­stairs, be­came the new cen­tre of our home — there was the ugly utilitarian equip­ment and the sup­plies that mul­ti­plied week by week: hoists, wheel­chairs, com­modes, piles of white linen that seemed to grow like a tu­mour in the house my mother had so care­fully cho­sen and dec­o­rated.

“Thank good­ness,” peo­ple would tell me, “that at least you have this time with her — time to say good­bye.” Of course, these are the same peo­ple who would say that when it’s their time to go, they would like it to be quiet, dig­ni­fied, in their sleep. No pro­tracted ill­nesses or loss of agency. This was not, I think, a good death. It is tempt­ing and hu­man to try to find the light in these dark sit­u­a­tions, but I have dis­cov­ered that it can be more de­press­ing. Some­times, there is no sil­ver lin­ing.

Then there were the peo­ple who said, “Wouldn’t you hate to be like that? I would hate it.” The un­spo­ken ques­tion be­ing, of course, ‘Why have you kept her alive?’

I was told re­peat­edly to “en­joy ev­ery minute” and “make the most of this time, it is pre­cious”. They were right. I knew there would be a time, not too far away, when I would make deals with the devil for just a minute ly­ing be­side her. But many evenings, it was too painful even to do that: I would be over­come by the brief­ness of it all, the un­fair­ness, the con­vic­tion that this is not my mother; that I couldn’t even look at her, and I hated my­self.

WRIT­TEN AROUND MOTHER’S DAY, 2015:

These are her fi­nal weeks, months, days. I am try­ing to com­mit ev­ery sin­gle mo­ment of them to my mem­ory for when she is gone, but I also want to for­get. I do not want the woman I re­mem­ber to be bed­bound, con­fused, in­con­ti­nent. I want to re­mem­ber her slim and smil­ing and beau­ti­ful, not bloated and bald. I would like to for­get her cur­rent in­ex­pli­ca­ble pen­chant for bun­nies and kiss­ing the stuffed dog good night. I want to re­mem­ber her fra­grant, stylish and be­jew­elled be­fore a night out. I want her to be the woman mak­ing sand­wiches for 20 peo­ple be­fore head­ing to the beach in the sum­mer, or sit­ting at the ta­ble with a Sudoku, with her glasses and a frothy, choco­lately mous­tache from a cap­puc­cino — her ‘happy face’ she called it. The idea is that I have a list of ‘ be­fore’ things here, but I can’t think of more, al­though there must be hun­dreds. I am sure it won’t al­ways be like this.

I don’t want to re­mem­ber my­self this way ei­ther. Peo­ple tell me nearly ev­ery day how won­der­ful we all are, how strong, how brave. The fact that I have a smile on my face is in­spi­ra­tional and spe­cial. I hope that I will even­tu­ally be­lieve this ver­sion of my­self. Mem­ory is a funny thing, so eas­ily ma­nip­u­lated: I see no rea­son why I could not per­suade my­self that I was brave, strong and happy, de­spite it all. I do not want to re­mem­ber the con­stant nau­sea, the evil thoughts about other moth­ers, the morn­ings and af­ter­noons spent co­cooned in my du­vet with my eyes clamped shut, try­ing des­per­ately to get back to sleep so I don’t have to go down­stairs to her and start the day. I hope I for­get some­times not be­ing able to look at her. I hope I for­get avoid­ing talk­ing to her fam­ily; my fam­ily. I hope I for­get re­sent­ing their healthy pres­ence in the house. I hope I for­get the ter­ri­ble friend I’ve be­come and my in­er­tia, paral­y­sis, lazi­ness.

I want to re­mem­ber these days, and I hope to god I for­get them. There are days I spend wan­der­ing the streets for hours, or bar­ri­cad­ing my­self in my room, and there are days when I climb into her bed and lie there, breath­ing her in, un­til she kicks me out.

At times like this, I won­der how I am still here. I won­der how I have not sim­ply dis­ap­peared or melted away, or just been ab­sorbed gen­tly by the earth. How is it pos­si­ble that I am here and I am watch­ing this hap­pen to my mother? This watch­ing has be­come nor­mal — or some­thing like it.

We are plan­ets or­bit­ing her; ev­ery­thing comes back to her. What would she like to eat, watch, lis­ten to — these ques­tions are of ut­most im­por­tance in this house. I

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