The Stairlift: A Tale Of Regret

“Will you come up the stairs a step or two behind me?” Uzma asked me one day in early September 2018 as we were getting ready to go to bed. Various chemotherapy regimens had damaged her peripheral nerves. She was having difficulty feeling the floor and just knowing where her foot was without looking at it. Walking steadily without support was becoming an increasing challenge. By then this had been going for some time. It started out as an off-and-on problem, but for the past three or four months, it was more often on than off. “I just don’t feel safe going up by myself today,” she explained. “Of course,” I said, and walked one step behind her as she went up the stairs. The next morning I walked a step ahead of her as she came down for the day.

I didn’t know it then, but that — me climbing up the stairs one step behind Uzma, and one step ahead of her when coming down — was soon to become a daily routine. It was as if we were finally doing the phere (rounds around the fire) that we had missed when we skipped our religious wedding ceremonies. Only the fire was one lit by cancer, and it was consuming Uzma’s body. Gradually, by late October, weakness and overwhelming fatigue started to compound the balance problems. She spoke about needing a nap after a shower. Then one day, she asked, “Could you give my bottom just a little push as I go up each step?” She could walk by herself, taking support from a wall, on flat ground. But going up and down steps was another matter. I started wondering if I should look into stairlifts.

* * *

Mental health professionals will recognize “Woulda, Coulda, shoulda!” as the words that haunt people whose lives are stalked by the twin demons of guilt and regret. These three words, obsessed over too much, lead a mind down the labyrinthine rabbit hole of soul-numbing depression and anxiety.  At least as it relates to Uzma and being there for her, the two demons don’t quite barge into my memories and dreams. But I do see their shadows, sometimes. Those shadows led to my posts about Costs of Cancer, and to my understanding of how and why a referral to hospice was delayed.

The differences of faith and national origin we overcame to be together made our love unusual. But none of what I am about to describe below was out of the ordinary. Hundreds of thousands of people around the world are caregivers for their loved ones with cancer. They do all that I did with Uzma, and then some. They do it without fanfare and without recognition. I don’t seek a medal either.

* * *

Once Uzma was told her cancer was stage 4, it was as if she had been thrown off the train we had been riding together. She was put on a different train from her family. It ran on a track next to ours. We kept pace together. We just knew that her track was gonna end before ours. When you riding a train, you can’t really see where the track ends even if you know it will.  Like many in our situation, despite being on separate trains, we held hands, stayed up together, spoke of our dreams and our fears. We tried to help each other as much as we could. I kept helping her with an increasing number of daily tasks of self-care as her train slowed. She kept helping me through life’s problems to the very end.

Living life fully with Uzma even knowing our journeys were separate is what saves me from the guilt that some feel after a loved one is no more. Guilt is uppercase “Woulda, Coulda, Shoulda.” We can avoid guilt by how we live and treat each other when we together. Regret is another story. It is inevitably intertwined with loss. Its focus, degree, and intensity may vary, but where there is grief, there’s regret. Once Uzma’s cancer had spread beyond the breast and its lymph nodes, her end was written. Nothing could change that fate. But I do think at times, if I had done this or done that, perhaps her final days could have been more comfortable. Regret is lowercase “woulda, coulda, shoulda.”

* * *

In August of her final year with us, Uzma confided one day, “I too disabled to do anything with you or the kids. I am not sure there’s any point in continuing treatment.” She was in two minds about continuing treatment. She felt tired, exhausted. The cancer treatment toolbox is full of things to poison and burn the cells that are doing their own thing, not sticking to the plan. Though these treatments also harm normal cells — hence the side-effects — patients willingly take them.

They take them because of hope. They think, “So what if I will have some temporary or lasting damage. If this treatment ends up working, at least I will be free of cancer.” But when the errant cells turn skilled tricksters, oncologists are left playing whac-a-mole with their treatments. The patient suffers a lot of hits on her body while the mole that is cancer seems none the worse for it.

The first drug Uzma took after her cancer came back kept it at bay for nine months. After that, nothing worked for more than 3-4 months. Fantasies of N.E.D. (no evidence of disease) status were vanishing illusions. For some people, successive treatments manage to work for several months or rarely, even a couple of years at a time. Uzma wasn’t so lucky. Uzma was tired of the hits her body had taken without any benefit.

When she said she was in two minds about continuing treatment, I said, “You have suffered a lot. If you stop treatment, I will support that decision. I won’t think you love our kids or me any less just because you stop treatment.” It seems like the right thing to have said at that moment.

But I think it would have been better to say, “I love you. You’ve suffered a lot. You think you have to keep going, to take that one more chance that our kids won’t grow up motherless. But you are taking a beating. It might be time to be a bit selfish and choose comfort over another treatment.” One might think, what’s the difference? The first way of saying implies that the decision to quit treatment is hers, and I am there just for support. The second way is one where I help her think and feel through this decision.

I thought of saying something like the second way, but then, despite all the love we had nurtured over the years,  or maybe because of it, I bit my tongue. I thought, what if she sees that as me picking a side against hope? What if she sees that this isn’t just her husband saying this but someone who also happens to be a physician? Does the physician in him see no hope at all? Is it that bad? Am I so far gone?

* * *

The reason I feel regret but not guilt about this is that I still believe that oncologists should be responsible for bringing up hospice in a timely manner. Patients and families don’t know a lot about hospice, about it can help. They think of it as only as a death sentence. The fact is the oncologists know that the death sentence is stage 4 cancer whose odds of responding in a timely manner keep going down with each successive treatment failure. An intense cloud of emotions envelopes patients and families dealing with terminal cancer. They can’t see things as clearly as their doctors can.

Uzma made some physical therapy (PT) appointments in October, hoping that PT will help her gain her strength and balance back. However, her unrelenting cancer kept grinding her down, and the resultant weakness meant she could never keep any of those appointments. Between September and December, medicines caused enough bone-marrow suppression that she needed multiple blood transfusions. Though I can tell the various ways in which both of us were clear-eyed about her prognosis, there are also ways in which we didn’t want to buy it.

* * *

Even before Uzma’s oncologist finally stopped treatment and referred her to hospice, the writing was on the wall. In early December, I started calling business outfits that installed stairlifts. Because it was the holiday season, everything took longer. Visits to take measurements took longer to schedule. Quotes took longer. Actually scheduling the installation took longer.

The emotionally toughest decision around the stairlift was whether to rent or buy. By this time, Uzma was too tired and drained all the time to participate in any household decision. To rent or buy had to be my decision alone. The total rent for about eight months was to be the same as the cost of buying outright. What was more important — a rational decision about money, or letting Uzma know that I thought there was still hope?

Part of me just wanted to buy. Part of me wished health insurance covered stairlifts. Then the insurance overlords would make the decision. And I would accept the decision while blaming them for limiting our choice. But stairlifts are home modifications, not medical equipment. So, no insurance company knight in shining armor. I decided to rent it. At least that decision made choosing the company I went with easier; of the ones I got quotes from, only one rented them. I dreaded what I would say if Uzma asked if we bought or rented the stairlift. Would I tell her the truth? She always wanted to wrestle with the truth, no matter how difficult the match. Or would I speak a white lie that would not hurt her? To this day, I feel that dread. But Uzma didn’t ask, and I didn’t tell.

The stairlift eventually came in late December. Immediately, I saw how much easier it made things for Uzma. She no longer felt nervous going up or down the stairs. To this day, I regret not having pursued the matter of the stairlift when I first thought of it in October.

* * *

Grief is a mixed bag both when death comes unexpectedly and when it is long and drawn-out. In the first kind, it’s as if a nuclear winter falls over a family. The old world goes dark in the snap of a finger. A sudden loss is incredibly tough on the grieving; it has the potential to complicate mourning with a mountain of regret.

In the gradual type of loss, death first casts a shadow on a family. The shadow gets imperceptibly longer each day. Sometimes years and months pass with barely noticeable changes. Then just towards the evening of the loved one’s life, the shadow seems to lengthen so quickly that it feels like only seconds. The evening mist that one ould see in the distance is suddenly upon us. And just like that, our loved one is gone.  The speed of the final stages of dying creates opportunities for regrets even in this kind of loss. The only hope is that the regrets are few and fleeting.

The Hardest Thing About Grief

If you were my patient, and you were grieving, I would comfort you. Most of the time, I would know the words to say and the ones to skip. I would help you think about loss, grief, and life in a way that would spur you to action. I would help you fit your thoughts and feelings differently than when you came to me. Hopefully, this would help you live better with your grief. I would say to you, “I don’t want to make you forget about your loved one. I hope to help you live better with their memory.”

Accepting the loss of a loved one is the first task of grieving. For weeks after Uzma died, I wanted to see her when I turned around the various corners in our house. I waited to hear her voice. It still feels off not to have her next to me in the car, on a plane, on road-trips, and vacations. I am often half-lost without her as my problem-solving partner. All this still happens. But time dims its frequency and pain. Repetition is the mother of learning, they say. When reality keeps dashing the hope of a loved one’s presence, the heart eventually gets it. It accepts the permanence of loss.

Adjusting to life without the loved one — another task that every bereaved person must eventually master — is a bit harder. Accepting the reality and finality of loss does not make this easy. Uzma and I were equal partners in life. But even equal partners split the tasks of life in unequal ways. Their differing interests, skill, and circumstance decide where the line gets drawn.

Uzma worked part-time since our oldest was born. But that was outside the house. Inside, she was the engine behind our family’s social calendar, the kids’ extracurricular activities, and most of the day-to-day planning and organizing of our life. I helped with all of them, but she was the wizard who made it all work. Adjusting to life without her means figuring out how the trick works after the magician s gone. Someday I will get the whole illusion, but today isn’t that day.

A surviving parent must also adjust to life by taking on the sole responsibility of helping children grow up adequately adjusted. They must grow up reasonably content. Capable of love. Practiced at enjoying life. There’s one plus to being the only parent. One doesn’t need to check every new thing about the kids with the other parent. But there’s a significant downside. One doesn’t have anyone equally invested in the same kids with whom one can when one wants, discuss every new thing about the kids.

It could be something as simple as figuring out the right age for each child to have her first mobile phone. One must decide upon the best way of teaching her to be on time, to be a good judge of character, to consume media critically, to manage money properly, and a million other things. Usually, parents complement each other in small and big challenges like these. Each fills the gaps in the parenting temperament and skill of the other parent. While self-aware parents are always trying to improve on this, the loss of one’s parenting partner makes all this harder. Having said all that, young kids at home do force one to move on with the first two tasks of grieving.

Failing to navigate grief properly is risky. One must give grief its due, but no more. Otherwise, one gets stuck with what counselors call “complicated grief.” Complicated grief is grief possessing the survivor in a way that she has a hard time returning to normal life. She becomes too focused on what reminds her of the dead. Or just as obsessively tries to avoid anything that reminds her of her loss. She pines so hard for who and what she has lost that she becomes detached from the living.

She wishes she had died with the one she loved. She is consumed by sadness. Not just in the immediate aftermath of her loss, but months and years later. About seven percent of the bereaved end up with complicated grief.  Though no one is immune, being a woman, being older, having a lower income, and losing a child or a spouse, especially to cancer, all these increases the risk of complicated grief.

For most of us, the passage of time makes the most of the work of grieving easier. However, there’s one part of navigating grief that seems to get harder with each passing day. It is the hardest part of grieving — keeping a connection with the dead while moving on with life. This task overlaps with everything else one does, whether adjusting to life again or accepting the finality of loss. Every social visit, road trip, vacation, everything one does to have fun, every step, and every breath to tackle life anew risks blurring the memory of the loved one. Meeting this challenge is critical to avoiding complicated grief. This, the thing that appears to get harder with time is the hardest thing about grieving. I hear me saying to myself, “I don’t hope to make you forget about Uzma. I hope to help you live better with her memory.”

There Is No Shame In Loss

I loved the movie O’Brother Where Art Thou. There are a couple of related scenes from that movie that came to mind recently. For those who haven’t seen the movie, it’s set in the south — Mississippi, I think — during the Great Depression. Three escaped convicts, with the authorities in hot pursuit, end up at the farm owned by a cousin of one of the three men. As they are sitting at the kitchen table eating, one of them asks his farmer cousin about where his wife is. The farmer glances at his son sitting across, then back to his cousin. He first says something to the effect that he doesn’t know. Then, in a matter-of-fact manner, he adds, “Mrs. Hogwallop up and r-u-n-n-o-f-t.” We can see that he is trying to protect his son from the devastating truth about the young one’s mother.

A couple of scenes later, when the authorities have the convicts surrounded at the farm, the young boy comes driving the family car and offers to help the convicts escape again. And he says, “Get in boys. I am gonna r-u-n-n-o-f-t!”

Suddenly the audience realizes that the kid knows more than his father thinks he knows.

I am reminded of this scene every time I am with friends and relatives who try to speak of Uzma in hushed tones when the kids are within earshot. They think they are protecting our kids by not making them think of their loss. Like the father in the movie, they are well-intentioned. But they just don’t get it.

Our children saw their mother live with cancer. They saw how she chose to live life fully despite her illness. She made many new friends in her last few years. She wrote a blog. She wrote a book. She was a model for a nationwide beauty store chain. The saw all that.

When Uzma was around, she was the one who first greeted them when they returned home from school. When she was well, it was she who took them clothes’ shopping. She cooked their favorite meals. She arranged their play-dates. She nursed them when they were sick.

Then they saw their mother gradually become weak. She stopped doing most of the things she used to do for them. They saw her become unable to climb stairs, bathe, use the bathroom and even get into her bed on her own. They were next to her when she breathed her last. They lay next to her for several minutes before the funeral home staff came to take her away. They felt her get cold and stiff. The saw and felt her die.

Whispers and hushed tones are for secrets, especially shameful ones. Uzma’s death is not a shameful secret that must be whispered about.

The way she lived it and way she died is burned in my and our kids’ memories. Whether we speak of her every day or not speak of her for months is irrelevant to us missing her. How is it possible that not speaking about her in our kids’ presence will make them feel their loss any less than daily absence does?

There’s no shame in loss, no guilt in grief and no embarrassment in mourning. And let’s not make our kids think so.

 

First Flight Without Uzma

As we settled into our seats on the plane, Gauri said, “Our family is sitting together for the first time.”

“What do you mean?” I asked.

“I mean Mama is not with us. So no one has to sit on the seat there.” She pointed sadly across the aisle.

We were in a plane with 3 seats on each side of the aisle, heading to Boston to visit a friend. It was a trip that Uzma and I had really wanted to make last summer, but never could make it work because of cancer.

Sometimes I felt guilty saying we couldn’t visit someone because of cancer. It’s not like we didn’t travel at all during Uzma’s last year. We took a trip during the kids’ spring break. We also went to Niagara Falls on the fifth anniversary of Uzma being diagnosed with cancer.

Originally, Uzma had planned to celebrate that milestone in New York City with a couple of breast cancer survivor friends. By the time the day drew near, she knew she wasn’t really feeling well enough to coordinate anything with friends. Less than a month before the Niagara trip we had found out that yet another treatment regimen had failed her. We ended up planning that break for the falls just 3-4 days before.

This is what I remind myself when I feel guilty about not visiting people who mean a lot to us in the last few years. Cancer, it’s treatment, and side-effects of treatments kept us from making any plans with friends and relatives. It felt easier to make last minute plans by ourselves.

When traveling on a plane with 3 seats on each side of the aisle, we had seen families of four split up a couple of different ways. Either they would sit two by two, usually in back to back rows. Or they would split up across the aisle. We preferred to sit in the same row. That meant one of us — Uzma or me — sat across the aisle from the rest of the family.

Now that it is just the three of us, our amputated family sits together. How will we manage traveling on a plane with only 2 seats on each side of the aisle? Will there be an argument about who gets to sit with whom? Deciding not to worry about that now, I started thinking about life without Uzma.

This was the first trip ever without Uzma. You could tell. I thought I had managed to get us all packed and ready on time. As we settled in on the plane, it dawned on me that I hadn’t taken anything to keep the kids busy. Uzma always used to make sure they had enough activities to stay occupied — books to read, books to color, sheaves of loose paper, pencils, coloring pens, and pastels. You name it, she would pack it. There was no chance of boredom. I had packed nothing. Zilch.

Fortunately, the plane had a screen for each seat. It had a decent selection of kids movies to choose from. That made the 2-hour flight really fly.

Not really though.

There was a stranger across the aisle.

So, What’s New?

The other day, about 3 weeks after we buried Uzma, I was getting a haircut at the neighborhood barber’s. The friendly guy that he is, he asks, “So, what’s new?”

Do I tell him Uzma died? Do I not? I decide not to dwell on the question too long. A pregnant pause with one’s barber at this point would be weird. In a split second, I reply, as if instinctively, “Not much. How about you?”

He starts telling me of the vacation he is planning with his family for summer. My mind wanders off.

I have forgotten how to plan vacations this far ahead. The last time we planned a vacation, staycation or even a weekend trip months ahead was a while ago; looking back at Uzma’s stage 4 cancer journey, it seems like a lifetime ago. Most of our trips in the previous few years have been last-minute adventures. If Uzma’s condition and treatment were stable close to some break coming up for the kids, we would go. “I should also start making plans now,” I tell myself, “so that once again we can start getting whatever qualifies as a bargain these days for air tickets.”

How do we decide who to tell and when to remain silent about a calamity that has befallen us? I’m not sure there are any rules for this. Will people know what to say? Will they become uncomfortable?

Will they say something irritating like, “You’ve to be strong for the kids.” As if I don’t know that! Or will they say another common line, “At least she is not in pain any longer.” Yeah, that’s because she is dead! “Is that better?” I feel like asking. But I don’t. I don’t want to make them uncomfortable. Some people will say, “I am sorry for your loss. I wish I could do something that would ease your pain. I am here for you.” When said sincerely especially by someone who you know will check in on you soon, those sentences have an intriguing soothing power.

In the South Asian community, Uzma and I often heard of and from people who didn’t share their cancer diagnosis even with close friends. Sometimes, not even with close family members. We would often wonder what that was about. Why the stigma about something no one could accuse you of bringing upon yourself? After all, cancer is not like a mental illness whose victim can be casually and cruelly blamed for bringing suffering upon herself. It couldn’t be blamed on a lack of willpower.  Uzma believed it had to do with the practice of arranged marriage in our community. If it became widely known that a parent had cancer, her son or daughter might be shunned when it’s time to search for a bride or groom. I don’t know if that is the reason, but it seems as good as any.

Uzma did not hide her suffering. She shared it. She hoped to inspire more people to share and be open about their cancer so that all could learn from each other. Sharing brought incredible emotional support from both friends, old and new. Not just to her, but also to her family. Whatever she gave of herself, she got in return many times over. I am not sure about the term “Facebook friends.” It is often used with some disdain. But I’ve seen Uzma form meaningful emotional connections with people she has never met in person. When you do that, isn’t a Facebook friend just a real friend we haven’t yet met?

Hospice staff encouraged us to tell the kids’ schools about mom being in hospice. We did. I also told the schools when Uzma passed away. I let the parents of the kids’ closest friends know. “Who else can we tell?” some asked. “Tell whoever you think would want to know,” I said. I am glad I did. Many of our children’s friends came to the funeral with their families. Some of their teachers came too. Our kids felt incredibly supported. Many friends offered condolences in their own way when they went back to school. But one boy kept telling our daughter that he didn’t believe that her mother had died. That it was a lie. That little twerp, I thought. But he was the exception.

“How do you like it?” asked the barber as he handed me a mirror so I could see how he had cut my hair on the back of my head. It was fine. I paid him, tipped him, made some small talk and left.

That evening I resumed my train of thought, how should I have responded to that question, “What’s new?” Obviously, a lot is new. Uzma is not around. I am a single parent. The only breadwinner, not just the primary one. I am no longer one member of a team of two responsible for the physical and emotional wellbeing of our kids, I am the team. All family decisions, big and small — from what to cook tonight, to which dishwasher to buy to replace the one that just broke, to the kids’ education are now mine alone. Soon Uzma’s name will no longer be there on various financial accounts, tax returns and even on return address labels. It won’t be on travel itineraries. Until our son grows up a bit more, I will have to get used to being the only one driving the family around and doing so with an empty seat next to me. She won’t be there on her birthday, on Mother’s Day, on the kids’ birthdays. All that, and much more is new.

I am glad I didn’t unload all this on the barber. If only he knew the bullet he dodged! So who should we tell, and who should we leave alone. I am sure there’s no one single approach. I could take the path of looking back at my last meeting with a person and recalling wither she asked about Uzma then. Uzma’s existence had to have mattered to them for her non-existence to matter.

Clear cut this approach might be, but it would be antithetical to Uzma’s attitude, from which I could learn a lot. Her stance was one of openness to new emotional connections. After much reflection, I decide that my rule of thumb will be to share my loss with anyone if the setting is conducive to active listening. A barbershop is not, so it was still okay that I replied, “Not much.”