One year ago tomorrow, Arijit died.
It still seems unbelievable that 365 days ago, he was alive. I have a photo of him from that day; it’s of him, asleep, with our cat curled up on the pillow next to him. The last text message he ever sent me arrived at 1:17am. It reads, “7 years ain’t enough. I love you.” I’ve gotten better at a lot of things this past year, but I still can’t read that message without crying. Just like there are still songs and emails I can’t make it all the way through. I test myself every so often. The list is shrinking, but it’s not down to zero yet.
I’m writing this on the 21st because I plan on hermitting away tomorrow. I’m at Monument Valley, on the Arizona–Utah border, which is an excellent place to fall off the grid for a day. Arijit and I were supposed to come here for Valentine’s Day last year, but he was having too many problems with his G-tube for us to make the five-hour trip. So I’m here now. It feels right, or at least as right as anything can feel this weekend. I go to beautiful places on difficult days because sometimes I need the reminder that life is beautiful. Arizona, for all its many faults, is an incredibly beautiful state. It was one of things about this place that Arijit and I both loved. So I bring him to all those places he didn’t make it to, because I see him in the landscape and I hear him in the birdsong and I feel him in the sunshine. I see and hear and feel these things, and I know he sees and hears and feels them, too.
I’m still not sure how I got here. The strange temporal mismatch of grief is still strong, and I still remember the day he died like it was yesterday. Very little of this makes sense, except in that grander scheme of life and death and cycles, but I’ve stopped expecting I’ll ever figure it out. I just know that I’ve made it this far, and life is good, and I’m generally happy, and right now, that’s enough. I’ve worked hard to get to this point, and I’m ready for day 366.
And so much of that is because of all of you. I’ve done much of my grieving alone, by choice, but when I didn’t want to be alone anymore, I was never at a loss for someone being right there, waiting. In the days and weeks after Arijit’s death, so many of you reached out to me, and even though I dropped off the face of the Earth for a spell, know that those little words meant so much. And it wasn’t just those of you I was so fortunate to count as friends—people I had never met, but who loved Arijit, shared that love with me, too. Thank you, all of you, for your patience and kindness this past year. No one ever expects to start their 30s as a widow, but if that’s how things must turn out, I’m a pretty lucky lady, all things considered. The future looks much brighter because you all are in it.
But first, day 365. A day to celebrate Arijit, the love of my life and my hero, now and always; to mourn the time with him I lost; and to cherish the time I was so deeply lucky to have.
Fuck cancer, and long live love.
***
For those of you who also love Arijit (and if you are reading this, I assume that applies to all of you), I hope you’ll join me in doing one good thing in his honor this weekend. Donate time and/or money to a cause you believe in, perform a random act of kindness, reach out to someone in need, tell the people in your life that you love them, plant a tree or feed the ducks or hug your pets—anything that leaves your world a little brighter and kinder than you found it. Arijit was one of the rare examples of a person who was just truly and simply Good, and it’s up to the rest of us to keep that little flame of his goodness burning, because that keeps him with us, too.
I haven’t written here in a long time.
Not because I don’t have anything to say. In fact, I compose posts in my head on an almost daily basis. It’s just that I do most of this thoughtwriting late at night, right as I go to bed. And sometimes it gets the best of me, and the pain and sadness come rushing in, and all I want to do is stop crying and thinking and fall asleep, but I know that if I get up and start writing for real I won’t be able to stop until it’s all out, and I’m not as young as I used to be, so being up at 3am is less appealing than it once was. So, instead, I push it out. I think of something else. I tell myself I will save these thoughts for a better time.
Of course, at better times, I’m not thinking about this. I’m wondering what to make for dinner or doing work or out attempting to be social or generally trying to live again because that’s what Arijit would want. Or I’m looking off into the middle distance, thinking about nothing at all, because my ability to focus still hasn’t fully returned. Or I’m staring at the cats. I do that a lot. They don’t seem to mind. I think they appreciate the audience.
The thing is, though, we are creeping up on the one-year mark, which leaves me with a lot of emotions to sort through.
I can still picture so much from that day. Watching his breathing slow. Telling him I love you. Holding his hand. Our cat asleep in his lap. Hearing his hospice nurse say, “I can’t find a pulse.” Hearing myself respond, “I’m not surprised.” Feeling like that was a terrible response. Wondering what a better response would be. Realizing there probably isn’t one. Flurries of phone calls. Pouring his liquid morphine into cat litter because it was a way to be useful. Kissing his forehead as the morticians took him away, startled by how unexpectedly, though entirely expectedly, cold he was. Sitting alone in our suddenly quiet and empty apartment, confused as to why I wasn’t crying. Sleeping on the couch, which was still in the middle of the living room, next to the hospital bed, because that’s where I’d been sleeping for the previous month and nothing else made sense.
I don’t know how I feel about this day. I’m not looking forward to it, but I’m not dreading it, either. I feel like I should be, though. But maybe I shouldn’t. I don’t know, I have no point of reference. Every other first without him—our anniversary, our birthdays, the holidays—were days I could celebrate. This is not a day you celebrate. It’s a day you survive. And if I could survive that day one year ago, I can certainly survive it now.
It’s not a day I want to remember, but it’s a day I can’t forget, even if I wanted to.
But I don’t want to forget.
I won’t forget.
So now what?
A few days ago, in an email to friends and family and a post on the Facebook page, I announced that I’d be dissolving Poop Strong after the end of the year. Given the response, I feel like a bit of explanation is in order.
Poop Strong is, and always was, a fundraising platform—first to cover Arijit’s medical expenses, and then to help other cancer patients in need. Not to detract from Arijit’s hard work and dedication, but it’s really a happy accident that Poop Strong became something more than a plea for money. No one could have predicted how it would blow up, or how Arijit would become a spokesperson for healthcare reform and patient advocacy, or how many people his story would touch. But, in the beginning, it was little more than a website selling silly shirts and collecting money so we wouldn’t go broke.
In soliciting donations for the Poop Strong FUNd, I’ve come to realize that I’m really bad at this. Fundraising requires a certain type of personality and a certain amount of energy to do well, and I have neither. Arijit, though, had the magnetism and drive to be successful.
He also, I’ve come to realize, had me.
Part of the reason that Arijit could throw himself in Poop Strong with such force is that he wasn’t doing it alone. He could spend all day online posting updates and engaging in Twitter battles because he had a wife who cooked meals and ran errands and did laundry and paid bills and cleaned the apartment and fed the cat and somehow managed to fit in her paying job. I ran our household so he could run Poop Strong, and we were a great team. I am still running said household, except now I’m doing it alone with the added work of grieving and putting my life back together. Even if I had Arijit’s knack for this sort of thing, I can’t do it all. I never could. And so, once the campaign for the FUNd is over and the remaining monies have been donated, I’ll be officially closing the Poop Strong store and accounts and updating the website one last time.
But this doesn’t mean that the work is over. Poop Strong has come to represent so much more than one man’s struggles with insurance. It long ago moved beyond raising money and into raising awareness. It’s about educating and engaging and advocating and speaking for those who lack a voice. It’s about making your world a little kinder and more beautiful. It’s about compassion and justice and hope.
This is not the end of Poop Strong—Poop Strong is Arijit’s legacy of goodness and love, and no one can stop that. I haven’t yet figured out how I’m going to carry those ideals into the future, but I know it has to be in a way that feels true to me, and to him, and to us, and fundraising isn’t it. I still plan on writing here, and posting to the Facebook page, and Twittering. I imagine there will be a lot of trial and error, but I want to keep the conversation Arijit started going. I’m not sure exactly what that will look like, but I owe it to him to try.
I’m still in awe of what Arijit accomplished with Poop Strong. I wear my bracelets every day as a reminder of what an amazing and inspiring man he is. But I know there’s a lot left to do.
Let’s see how far we can go.
***
Also, for those of you who didn’t know, or who perhaps just didn’t realize the date, December 5th would have been Arijit’s 33rd birthday. I spent the day hiking in Flagstaff, where it was cold and snowy (at least by Phoenix standards; feel free to laugh if you live in a place that regularly experiences this thing called winter). Being outside on these sorts of emotionally charged days helps me feel close to Arijit, and it reminds me of how lucky I am to be able to enjoy such things. I know he’s with me wherever I go, so sometimes I like to take him to see the sights. Plus, he always hated it when people made a fuss over his birthday, so running away for the day seemed true to that spirit.
Please, help Poop Strong go out with a bang and donate to the FUNd if you’ve haven’t already. Consider it a belated birthday gift to Arijit. It’s about the only birthday fuss he’d be happy with. (Also, many thanks to the friend who pointed out the “go out with a bang”/explosive poop joke I totally missed. This is why Arijit loved his friends so much.)
How to Donate
Online
- Go to https://www.uahealth.com/ways-to-give/donations
- Select “Cancer Center Patient Assistance Fund” as the Program Destination
- Note that the donation is for the Poop Strong FUNd in the Other/Special Instructions box
You can also mail a check (made payable to the UA Cancer Center Patient Assistance Fund) to the following address (make sure to indicate that the donation is for the Poop Strong FUNd in the memo line):
Patient Assistance Fund
c/o Kristin Uribe
University of Arizona Cancer Center — North Campus
3838 N. Campbell Ave.
Tucson, AZ 85719
If you’ve followed this blog for a while, you’ll know that the concept of gratitude is a popular topic around here. Of the many gifts that Arijit gave me, his thankfulness is the one I’ve been coming back to to most. His optimism, his joy, his superlative taste in music—all these are fantastic things, but they are also all things I’m thankful I got to experience and make part of my life.
When you’re grieving, it’s hard to see those things for which you should be grateful. The world can seem like a dark and treacherous place. How can you be expected to go on when something so terrible has happened? Why should you even try? When Arijit died, it felt as though my world was ending. And, in a way, my version of the world did. But the bigger world keeps on spinning, and every day I’m grateful I’m still here to enjoy the ride. Everyone should be.
Being alive makes us lucky. Being able to recognize our good fortune makes us even luckier. I’m happy and healthy. My needs are met. I have two terrible cats who make me smile and encourage me to take daily naps. I am surrounded by people who care about me. I’m now and forever in love.
Today, and every day, I celebrate Arijit and all the things he brought into my life. I hope you all are able to see the things to be grateful in your lives, too.
***
In addition to giving thanks, please consider giving to the Poop Strong FUNd. The FUNd will help make the lives of patients with cancer, dementia, and other terminal illness more fulfilling and grant a little piece of normalcy and joy to families experiencing the stress of sickness. More information can be found here, and the donation directions are below.
Online
- Go to https://www.uahealth.com/ways-to-give/donations
- Select “Cancer Center Patient Assistance Fund” as the Program Destination
- Note that the donation is for the Poop Strong FUNd in the Other/Special Instructions box
You can also mail a check (made payable to the UA Cancer Center Patient Assistance Fund) to the following address (make sure to indicate that the donation is for the Poop Strong FUNd in the memo line):
Patient Assistance Fund
c/o Kristin Uribe
University of Arizona Cancer Center — North Campus
3838 N. Campbell Ave.
Tucson, AZ 85719
Thanksgiving was Arijit’s favorite holiday. It celebrated two of his favorite things: eating food and being grateful. To him, it was a day to reflect on how fortunate you were and to appreciate all the good things in life. Even last Thanksgiving, when the tumors had robbed him of his ability to eat, he was still thankful: thankful that he had the energy to cook, thankful that he could spend the day with people he loved, thankful he was alive and—more importantly—living.
Depending on the year, his birthday would come a week or two after Thanksgiving, though he was never particularly keen on celebrating it. Last year we spent his birthday in the hospital, where he was recovering from surgery to have his gastrostomy tube placed. At midnight, when one of his nurses came in with his morphine, he asked her to take a picture of us to mark the occasion. It was the first time over the course of our entire relationship that he wanted to celebrate his birthday. Despite being in a recliner in a cramped hospital room, it was exactly where I wanted to be.
I always knew I wanted to do something now, during this time of hope and generosity, to honor Arijit and his memory. And, in harnessing the power and love of the family, friends, and strangers who followed him, to bring some goodness and joy out of our shared grief, and to celebrate the season of thanks and giving by helping those in need, just as Arijit always strove to do.
***
Arijit and I frequently discussed how most of the focus on cancer (and other chronic or terminal illnesses) is on the physical—on treatment, on medications, on things you can quantify with blood tests or whatever—but that psychological and emotional needs aren’t talked about as much as they should be within the medical community. Quality of life was something we were concerned with, not only in terms of the cost–benefit for treatment, but in more basic terms like being able to do the things we enjoy—living a good life, whatever that meant at the time. Even with the insurance issues, Arijit and I knew that the only limitations we’d have regarding the things we wanted to do were related to his condition. If we wanted to go out to eat, or to a concert or a museum, or rent movies or play games—whatever it was—we knew we could. If we wanted to travel, we were constrained only by Arijit’s ability to tolerate the ride. Perhaps money should have been a concern, but it was more important to us that we enjoyed our life together, because that was the only way we’d make it through everything else. We were also blessed with a community of people who wanted to help, which frequently manifested itself as little care packages of music or movies or games or books or gift cards or cash (always with the instruction to “do something fun”). We were never at a loss for things that made us happy, and we always knew how lucky we were that our stubborn little quest to keep our lives as normal as possible was generally successful.
Everyone knows that illness, whether acute or chronic, terminal or not, is financially draining. Even with “good” insurance, there are plenty of out-of-pocket expenses that quickly add up, not to mention the added stressors of reduced income and benefits from the inability to work. When you’re struggling to make ends meet, a night out or a new book or a trip to a favorite spot—those small things that bring us joy and keep us sane that so many of us are fortunate enough to take for granted—seem like worlds away. Those breaks from reality that Arijit and I so cherished shouldn’t be a privilege; no one should have to choose between treatment/food/bills/etc. and the little uplifting luxuries in life.
Enter the Poop Strong FUNd.
Arijit knew that there was a world of difference between being alive and living, and every decision we made was geared towards ensuring the latter. The point of the FUNd is to help patients, caregivers, and their families afford some of those little things that make life worth living. The money could go towards gift certificates to favorite restaurants, or materials for hobbies, or massages or family outings or anything else that patients have had to forgo to simply survive. More than anything, the FUNd would serve as a way to provide some normalcy in an otherwise abnormal life—to remind people that life, despite all the stress and pain, is fun and a gift to be enjoyed. The FUNd will be incorporated into the University of Arizona Cancer Center’s Patient Assistance Fund, administered by the same people who helped Arijit when he hit his lifetime insurance cap. The UACC Patient Assistance Fund already helps patients with these sorts of little extras, but the FUNd will allow it to expand the range of services offered and reach even more patients.
In addition, all donations received through Christmas day (up to at least $20,000, though this could go higher once I look at the Poop Strong accounting) will be matched with a donation to Hospice of the Valley’s Helping Hands fund, which provides nonmedical necessities, such as clothing, blankets, or air conditioning; travel (for patients who are able, or for out-of-town family members to come to Phoenix); craft supplies, games, and other entertainments; and whatever else enriches lives to patients with terminal illnesses and dementia. Illness can be very isolating on its own, but for the largely homebound hospice patients and their caregivers, it’s even more important to have some way to engage with the world around you. Arijit was mostly confined to his bed during his final weeks, but even so, he was able to listen to music, scour the Internet, and play Trivial Pursuit with me—in short, continue to find intellectual stimulation, and thus meaning, in his life. The Helping Hands fund helps provide that same sense of meaning and enjoyment to hospice patients, filling whatever time they have left with happiness and fulfillment.
***
The holiday season is often seen as a time of hope, generosity, and concern for those less fortunate than us, but Arijit made those traits the core components of his everyday life. He was, and always will be, the kindest, most compassionate, most selfless and giving man I have ever met. When Arijit died, he left some big shoes to fill (and I mean that both figuratively and literally—he did wear size 13s, after all). He was a good man, in the deepest, most profound, and most beautiful sense of the word. I hope you’ll join me in celebrating Arijit, and continuing his legacy, by making a tax-deductible donation to the Poop Strong FUNd (instructions are below).
When Arijit finally entered hospice, one of his professors wrote the following: “I realize your dreams are changing now, but please let [us] know if there is anything we can do to make any remaining dreams come true.” With your help, the Poop Strong FUNd can bring to life the dreams of Arijit’s fellow patients, whatever those may be.
***
How to Donate
Online
- Go to https://www.uahealth.com/ways-to-give/donations
- Select “Cancer Center Patient Assistance Fund” as the Program Destination
- Note that the donation is for the Poop Strong FUNd in the Other/Special Instructions box
You can also mail a check (made payable to the UA Cancer Center Patient Assistance Fund) to the following address (make sure to indicate that the donation is for the Poop Strong FUNd in the memo line):
Patient Assistance Fund
c/o Kristin Uribe
University of Arizona Cancer Center — North Campus
3838 N. Campbell Ave.
Tucson, AZ 85719
Dear Arijit,
Well, here we are. Six months. I almost can’t believe it, but, then again, there’s a lot about this past half-year I can’t believe.
I still get caught up on the concept of time. How has it been six months since you died, when it feels like an eternity crossed with an instant? How is it that we only got seven years together, considering that I have a hard time remembering life before you? How is it that, statistically speaking, I have more than half of my life left and you are gone?
I try to leave the questions of time to the physicists and the philosophers. I recognize that the importance of this date—and, by extension, all the feelings and emotions tied to it—is entirely self-imposed. Today does little more than mark a completely arbitrary amount of time since an important event, so why do I feel so compelled to celebrate it (even though celebrate is entirely the wrong word)? Today is no different than yesterday, or tomorrow, or two weeks ago, or five years from now.
Sometimes I wish we didn’t have such exact methods for measuring time; grief seems like it would be so much easier if I couldn’t tally exactly where I am, which would mean fewer expectations (both from myself and others). But no, we are creatures of numbers, of order—dates are important. It’s how we keep track our ourselves, of our place now and where we are going. We cannot have progress without a starting point.
You’ll be glad to know that I am making progress. I can finally say that, generally speaking, I am happy again. There is still a very deep and unshakeable sadness within me, and it sometimes swells and overflows the barriers I’ve put up around it. I expect this will always be the case. I accept that there will always be some pain, no matter what other pleasure I find in life. But that’s the chance I took in loving you, and knowing that I could someday lose you. It’s the chance we all take if we’re brave enough. Luckily for me, our love is worth all the tears I could ever cry, and more. And that love—steadfast and unconditional and everlasting—gives me the courage to seek out new sources of happiness, and joy, and love. For the first time in a long while, I am optimistic about the future. I am sure I will be afraid and hesitate; I will stumble, and possibly fall; but I will pick myself up and keep going. I will live, and will do my best to live well, the way you did.
You died at the beginning of spring; it is now the first day of autumn. I am entering my third season without you. But however many seasons I have left, I will love you until the end of them. The road ahead is long, but knowing I have you in my corner, and in my heart, makes me excited for the journey.
Ami tomake bhalobashi, Arijit. Now and always.
I think about death a lot. It is paradoxically, though not surprisingly, an excellent way to remind yourself how fortunate you are to be alive, and how grateful you should be for the privilege.
***
Pretty much every day in Phoenix is a sunny day. It sounds nice in theory, but it complicates the grieving process: It’s difficult to sit around feeling sorry for yourself with the sun is shining. On dark, overcast days, if you’re feeling particularly miserable, it’s easy to convince yourself that the best thing to do is to curl up under a blanket with a cup of tea and a book and perhaps a friendly cat and just wait things out. But when you look outside and see a clear, azure sky, it seems almost wasteful to sit inside with the blinds drawn and sulk. Even if you know that, in Phoenix, “sunny” does not necessarily equal “nice”; in fact, “sunny” can just as easily mean “excessive heat warning and dangerous UV index.” But growing up in one of the cloudiest parts of the country has primed me to believe that sunny is good, and not going outside to enjoy it is to miss out on a rare and wonderful thing.
***
To clarify, I don’t think a lot about dying. I think about death. There are important differences: Dying is what happens to a person, death is what is left for the people still alive.
Generally speaking, dying is negative. It is sad, or scary. It makes people angry. Death, though—death is more neutral. Its inevitability, its universality, are comforting. Everyone will die someday. Money and power can sometimes stave it off for days or weeks or years, but not forever. Death is one of two unifying features of all living things.
The other is that we are alive.
That second one is the one that matters. But it’s also the one we forget about.
***
Since we got married, and indeed well before, the most important thing in my life was for Arijit to be happy. And the easiest, most surefire way to make Arijit happy was for me to be happy. It was a beautiful, infinite, positive feedback loop: if I was happy, then he was happy, which made me happy, and on and on and on. That desire hasn’t gone away.
I’ve always known that the most important thing to Arijit was that I was happy. After he died, this fact sometimes slipped my mind. I felt required to be sad. I became fixated on my grief, on what it meant. The depths of my grief became, to me, a demonstration of how deeply I loved Arijit. Being sad was the surest proof of how much he meant to me. Because I loved him the most, and because he loved me the most, I had to be the saddest. I was the grieving widow, and I would grieve my heart out. So I found myself subconsciously sabotaging my healing. In this secret and unspoken competition between me and everyone else, I was determined to win by essentially losing.
And then I realized how idiotic and self-defeating that was, and how I was doing the one thing that would hurt Arijit more than anything else. His love for me is eternal and unwavering, just as is my love for him. Nothing I do or don’t do will ever change that. So why was I forcing myself to be miserable?
Every day my heart re-breaks when I realize Arijit is gone. Sometimes I can tell what triggers it—seeing his photos, or a particular date, or some recalling some half-forgotten memory—and sometimes it just blindsides me. Sometimes the pain is intense; sometimes it’s more melancholic, or bittersweet, or wistful.
But it’s always there. And it always will be.
But the fact that my heart breaks doesn’t mean it is broken.
Just like the fact that I am sad doesn’t mean I can’t be happy.
***
It has been very sunny in Phoenix these past few days. So sunny, in fact, that planes were grounded because it was too hot.
This ultra-sunniness has meant that I’ve had a lot of time to sit and think. My bereavement counselor says that I am very cerebral about my grief. I think she is right. I like understanding why I am sad. It means I can figure out ways to maybe be less sad. If I understand what I’m feeling, then I can control it. Not that it’s possible to control grief, really, but it is possible to redirect it. To use it to reevaluate yourself and your situation and how you plan to cope. It requires a lot of critical self-evaluation, and honesty, and introspection; it’s difficult to face your fears and faults and not be consumed by them, especially at a time when you’re feeling emotionally vulnerable. But it’s the only way I know to go on.
Grief shakes your confidence. For some people, it shatters. For the lucky ones, it may sway and bend, but it holds. For some of us, grief bolsters your confidence to a somewhat insane degree. After Arijit’s death, for a time, I felt invincible—that if I survived this, nothing could touch me. Over time, much of that bravado has waned. In its place, though, is a very real sort of faith in myself, different and stronger than anything else that came before.
I have survived. And I’m trying to understand what that means. In the context of understanding life and death, this is important.
***
For the past three-and-a-half months, I’ve struggled to find my way back to a world that seems so different and unknowable now. My guide was gone, I have not traveled by myself in so long, and I was afraid of getting lost. But there is a great, big world out there, full of fantastical and wonderful things, that will keeping turning with or without me.
That indifference is strangely life-affirming. Apparently I do well with benign neglect.
Last week was the 4-year anniversary of our courthouse wedding. I went to the Grand Canyon that day. There’s something very comforting and exhilarating about the outdoors, about speeding across the high desert with all the windows down, about staring over the vastness of the canyon and seeing physical proof of the vastness of time, about sitting quietly and listening to the bird song echoing from a stand of aspen. In the beauty that is nature, I saw the beauty that is life and love. Both of those things are important, but only one is infinite. I am every day reminded to cherish the one that is not.
The utter improbability of life is what makes it so beautiful. To hide away from the world is to miss out on the great and infinite mysteries of being, mysteries that we has human beings have an almost sacred and profound duty to explore.
As Calvin from Calvin and Hobbes so succinctly put it: “It’s a magical world, Hobbes ol’ buddy. Let’s go exploring.”
I couldn’t agree more.
Arijit hated funerals. So he’s not having one. Instead, I threw him a party to celebrate his life, and the lives of everyone who loves him. He wanted people to get together and tell stories and share happy memories. He wanted his friends and family to take comfort in one another and enjoy life. And so we did.
Because he didn’t want a funeral, there would be no eulogies, no public speeches of mourning. We met up in a ballroom and ate snacks and laughed, because everyone who knows him has a good Arijit tale to tell.
But I cannot shake the fact that someone as special and wonderful as Arijit deserves a eulogy. He wouldn’t want one—for someone so sure of his own amazingness, he had a very hard time hearing how amazing he really was. But he should have one. I want him to have one.
Everyone who reads this blog already knows about Arijit’s grand and glorious achievements, of the ways he was trying to save the world. Instead of talking about those, I’d rather tell a story of us. Of the greatest gift that Arijit gave me, the gift that gives me the hope and strength to get through this.
Arijit and I were 24 and 22, respectively, when we first met, and we started dating seven months later. He was my first real relationship, and I his. This meant that we both came into the relationship lacking all the experience and skills in dating that most twenty-somethings have developed, which lead to a rocky first few months. We were terrible at communicating. We misread signals. We had sharply differing expectations. I thought he was selfish. He thought I was needy. We were both right.
More than once we each considered calling it quits. I’d like to say that the reason we never did was because we realized that we had potential and that our problems were those inherent to all new relationships—that with time and openness and honesty we’d learn what the other needed, and how to provide for those needs, and that successful relationships involve giving and taking, but in even measure. But that’s not the reason.
The real reason is that we were both afraid that we wouldn’t find anyone better.
I realize that this sounds a lot like settling, but, like so many things in life, it’s much more complex than that.
You see, we had each decided, long before we met, that we were weird. Our interests, quirks, habits, and personalities made us different. We were proud of who we were, and had no intentions of changing, but we feared that we would never find anyone who would understand, let along appreciate, all those little odd things about us. Arijit had resigned himself to being alone, and I wasn’t self-assured enough to go after what I wanted.
But here we were, with this person who not only understood and appreciated those things, but actually enjoyed them. He found it adorable that I sang nonsense songs to myself. I laughed at his strange sense of humor. We shared a love of incredibly nerdy pursuits. He respected my sometimes intense introversion. I thought he was beautiful. We just felt so comfortable around each other. For us, finding someone who actually liked us despite our perceived strangeness, and who wasn’t scared off by all those things about which we were self-conscious, was so rare a thing that we were willing to tolerate a lot of pain and frustration so as not to lose them.
In time, as expected, things improved. We got better at talking to each other about our concerns. We became less afraid of articulating what we wanted and needed. Things weren’t perfect—no relationship ever is—but we learned from our mistakes and did our damnedest to be the best partner we could be, because that’s what the other person deserved. In short: We grew up. And we fell in love.
Looking back on those early months, I can’t help but feel sad for the scared little people we were. But here’s the thing about love that surprised me, that I didn’t realize until recently: just how much it changes you. I can feel sad for those people because love has emboldened me. I am still the same weird person I was almost eight years ago—perhaps even weirder—but Arijit’s love gave me the strength to recognize that I shouldn’t have to wait around for someone to decide if and when they can love me. Arijit taught me that, despite my faults and idiosyncrasies, there is someone out there who would love me in spite of, and indeed because of, them. In those rare moments where I let my mind wander to thoughts of the future, a future that still seems so unreal, I worry that being loved by Arijit has ruined me for all other relationships, because the bar has been set so high. And then I realize that Arijit wouldn’t want it any other way—that we had worked so long and hard to convince the other of their own self-worth that I would be untrue to Arijit to believe otherwise.
So that is what most amazes me about Arijit: the transformative power of his love. There is nothing I can say or write that would truly express the depths of my appreciation for that gift. Instead, I just loved him back with all my heart, and focused those lessons back on him, and taught him that he was a person worthy of love, too. And the strength of that love is the reason I am still here today, writing these words, and not completely paralyzed with grief. This is the best way I know to honor him.
Today marks one month since Arijit died.
I was not aware of this fact when I was making my plans for today.
I have spent most of the last month not knowing the date. Arijit died on a Friday, and so that is how I’ve been counting the time: the first Friday since he died, the second Friday since he died, the Monday after the third Friday since he died. I’ve been navigating by days, not dates, which is why I didn’t notice that the 22nd had crept up.
I learned today’s date from a reminder email sent at midnight from our shared calendar, about a concert that Arijit wanted to attend tonight. As his disease progressed, he only added concerts he really and truly wanted to see to the calendar. This was the last one he added.
I told myself I would go.
And very late last night (or very early this morning), I cried for this date.
I cried because it had already been a month.
I cried because it had only been a month.
I cried because I could still so clearly see his face, and because I knew that my memories of him would eventually grow fuzzier.
I cried because the pain was still so fresh, even after one month, and so how could I hope that things would be different in two months, six months, twelve months, ninety-six months?
I cried for the time we had lost, for all the adventures we will miss.
But at least there was this concert. He had three concerts on his calender. I went to the previous two. I would do the same tonight, for him.
I slept in this morning. I missed the precise one-month mark, for I had no desire to relive sitting by his side, holding his hand, watching as his breaths grew ever slower until they finally stopped. I stayed in bed until the cat’s howling for attention finally drove me out.
I had one main job to do today: to buy more cat food for my howling cat. I had one secondary job to do today: to find a dress for Arijit’s celebration. I did both.
But the fitful sleep and the heat and the exertion tired me, and I returned home exhausted, with a headache.
I contemplated skipping the concert.
But you must go, said a little voice in my head. It was so important to Arijit.
You need to do this for him.
Are you really going to break your promise?
Arijit loved concerts; don’t deny him this.
It’s true: Arijit loved concerts.
But he also loved sitting on the couch together, listening to music. He loved curling up with a good book (or good Internet article) with music playing in the background. He loved filling the apartment with music.
Most importantly, he loved when I’d take care of myself. He loved it when I would recognize what I needed, and do that, instead of giving in to self-imposed obligations.
He knew that, of our many shared passions, live music wasn’t one of them. He knew that I was perfectly happy to sit at home and listen to the stereo than stand in a crowded venue just to hear the same song live.
And he loved me anyway.
So I am no longer going to this concert.
Instead, I have ordered some pizza. I will plug Arijit’s iPod into our speakers and play the music I am missing live. I will cuddle with my howling cat (though hopefully he will replace the howls with purrs) and eat my pizza and listen to the songs. I will probably cry, because I miss him so, and because it is no easier today than it was yesterday or will be tomorrow, and because even my happy moments are tinged with longing and sadness.
But before and after and during those tears, the house will be full of music. And through that music, the house will be filled with Arijit again.
I can think of no better way to celebrate him.
It has been almost three weeks since Arijit died.
It doesn’t feel like three weeks—it feels like somewhere between an instant and an eternity. It’s amazing how time can both fly by and stand still.
I don’t know that I’ve fully processed this all yet. Perhaps I never will. While I know that he’s gone, I almost half-expect that he’ll be there when I come home, or when I wake up. I look at photos of him and it feels like he’s still here, like he’s just away for a bit and will come back soon. My heart and my head are at odds on how to feel and think.
Arijit and I always tried to approach every step of this journey—from his diagnosis through treatment, and finally to the end—with a rational eye. We are academic types, and we take comfort in knowledge. We sought to control our fears though understanding them. We created order from chaos, and when we couldn’t, we embraced that chaos as the natural order of life. We stopped worrying about the unknown and focused what we did know, and what we could do.
I’ve tried to rationalize my grief, but I can’t. I’ve tried to make sense of everything that has happened, but it’s hard. My ability to think and reason has always been one of my greatest assets, yet it’s failing me right now
And that’s OK.
One of Arijit’s first posts here was entitled “The New Normal,” where he talked about how life changed post-diagnosis and how the key to survival was making sense of those changes and learning how to live with them. And so with “The New Normal, Part II.” My life has changed. I have changed, in ways I haven’t even realized yet. I can’t go back to the way things used to be; instead, I must work on getting my life back to normal, whatever that may mean now. I have to take stock of my life and figure out how to carry my old self into my new world. I need to accept my grief, and the vast set of uncertainties that come with it, and give myself permission to feel whatever it is I feel. I want to learn to move past surviving and get back to living, with all the joy and hope and wonder and love that Arijit and I shared, and will always share.
And so I am trying to embrace the chaos again, to take shelter in the unknown, and to trust my ability to wade through it.
Stage IV Hope 