When a threat to your life intersects with gaps in technology — purpose happens.
It’s almost the end of 2021. Christmas is around the corner and people are cautiously making plans to spend it with family or other dear ones again. For me, it’s an especially meaningful time this year for 2 main reasons. Reason one, I made it, I survived. I’m alive (unrelated to Covid pandemic). And reason two, I’m doing something I’ve only thought about in the past, i.e. figuring out how to help those who get left in the shadows when tech is more hyper focused on social-media-trending hot topics than what an individual and his/her family may actually be in need of. How these two intersected and gave me purpose is what I’m sharing with you today.
Three years ago (approx.) I had no idea that it could ever be this way. The constant tug-of-war between feeling like I can go about my life as if nothing happened and on the other side a nagging apprehension that my freedom is temporary. But it is this way. At least a couple of times a week still. It’s the worst at night when I think about the future. A voice in my head murmurs, “Will you really get to do all that you’re planning? What if the unpredicted happens again and there is no next month, week, or worse, next day?”. Then follows the laundry list of all those big and small things I have to worry about in this new life of mine, like the additional bills, adjustments, new contingency plans, and altered priorities. It can be daunting even for someone like me who’s used to life being a rollercoaster. I manage to fight back nagging doubts with the same approach that got me where I am today despite all the risks I faced during my beginning journey with cancer (Leukemia ALL Ph+). A large part of the strength to fight those doubts comes from having my tribe — wonderful family and close friends — who take care of me in so many ways. They stand with me as I’m making my way toward that magical five year milestone which is supposed to indicate my chances of survival for the long term might be better in the future. As I relive the memories, I often think of them. Especially my parents, who’ve been my primary caregivers.
Memories like those of my Papa, who was 78 years old at the time I was going through my chemo treatment a few years ago. He’d drive into the city twice a day, week after a week, to the hospital I was staying at; a city he’d only been to maybe a handful of times in his decades of living here in the Bay Area. In a large tank of a car, a 1990’s Cadillac. He would find free parking wherever he could (for a large Caddy! still amazes me) then walk up hills to my hospital, with his blue backpack full of food to tempt me with. Free parking because it’s so expensive to use the hospital garage as well as metered parking when you’re visiting for hours week after week, month after month. Food because I was in misery trying to find anything that would make me want to eat more than 3–4 spoons of it without crying from the sheer effort of will power it took to eat — the chemo had gotten rid of my taste buds and all those other nice things we are oblivious about that our body takes care of when we’re healthy and eating that slice of pizza at 1AM without a care. I fantasized about pizza often. I remember Papa would make me egg white omelettes, for protein, even though he hadn’t touched eggs for almost 20 years (he’s almost vegan) for spiritual reasons. What must that have been like? Just think of trying to get a die-hard sports team fan to wear a rival’s jersey to their team’s games. It meant way more than that for Papa to put aside his feelings about eggs just to give me a taste of something I could stomach. I still choke up when I think of how he’d often hold my head on his lap for a while because it comforted me, even though I am sure his arthritic legs must have hurt afterwards. And how he’d hold my hand every day he saw me in and out of the hospital — his big paw of a hand that made me feel like I was 5 again, warm, cushy, soft, and strong, which brought me more security and comfort than any words or medicine ever could have.
And then there was my Mom; the fiercest, most courageous woman I know, who stayed with me every day AND night during my worst weeks in the hospital, for MONTHS. She would sleep on chairs in ICU rooms overnight…chairs that are hard to even just sit on for longer than a couple of hours. A 70+ year old dealing with back pains and other concerns of her own. Putting that all aside and never letting me feel like she wasn’t happy to take on the 24/7 burden of caring for me. During other lengthy stays at the hospital, she’d wake up the moment I made a slight sound to help me out of my hospital bed multiple times night after night to use the bathroom or commode because it would take the night shift nurse too long to get to me (note: they had other patients to take care of too and were doing their best). She knew I still wanted to hang on to what remained of my dignity and would be as careful as possible to not let me feel embarrassed when I’d be having diarrhea (which happened often), or vomiting (which also happened often). She’d always been a very polite and sweet spoken person in dealing with others, but on one occasion, I’m told that she screamed in the ER hallway for someone to give me a blood transfusion when I was suffering internal bleeding and she had noticed the blood on my bed while we had been waiting for doctors to get back to us (it was one of those super hectic nights in ER). That was the one time I lost some consciousness for 24+ hours and she took over getting me to a safe and stable condition. I have no memory of it. My body had gone on auto mode. Massaging my legs and feet would be her daily plea with me; I hated that I’d give in sometimes out of sheer need for some tiny amount of comfort. In general, I hated myself for being such a burden. This was their age where I should be taking care of her and Papa, not the other way around. I have so many memories of her devotion…It’s not an exaggeration when I say that if my Mom hadn’t been by my side, I don’t think I would have made it out alive. I was weak beyond what I could have ever imagined was possible for myself; I lost weight dramatically in a few short weeks and was down to 86 pounds, unable to cut my own fingernails — Papa would do that for me, very carefully as both of us would be scared of a cut, because a cut meant possible chances of bad infections- , unable to move faster than a snail’s pace, and exhausted from infections, week long food and water fasts, tests after tests, constant lab work at all hours of the day and night, excruciating chronic pain from a GI issue that left me in tears almost daily (due to chemo meds), and sleepless nights for months with little relief.
The silver lining to going thru this crisis was the bonds that deepened aside from those I had with my parents. With my sister, my brother, my close friends, and my boyfriend at the time. My sister who is almost 2 years younger than me, became akin to a mother figure at times. Once in a while to give our Mom relief, she’d stay in the hospital with me for a day or two. It would be the little things that she did that would soothe me. When I’d get up to use the bathroom, I’d come back to a bed that was remade and fresh, as pretty as a hospital bed can look. It may be hard for anyone to understand what a mood boost that was, but it did wonders for me, I felt like I was at a spa. When things became cluttered and messy, she’d clean and organize, making sure I had easy access to things I might need when no one was around. When I didn’t want to eat, she’d patiently coax and feed me spoon after spoon. My parents and boyfriend did this too. It’s hard not to get a lump in my throat thinking about it. It meant so much. And when I needed better options than thin exposing hospital gowns, scratchy beanies, rough blankets etc, she’d go shop to look for alternatives. There was a great deal of frustrating experimentation and money spent. At home, she even gave me a bath once when I was too weak to do anything but just sit in a pool of water. My sister, who had not seen me naked in her entire life, bathing me like I was a baby. She’d too hold my hand and in all my years of being her older sister, I’d never more realized how much quiet strength she actually had. I thought that as the eldest I did but she blew me out of the water. It supported us all.
I was fortunate that in addition to my family (extended family too), I had my best friend and other close friends, part of my internal tribe. They were there from Day 1, when after a visit to ER I was diagnosed with cancer, was septic, and immediately admitted to ICU. Their constant loving check-ins over the phone and in person to see what they could do for me/us and their frequent visits to cheer me up, despite having families and work demands to take care of their own, made the ordeal more bearable. My biggest relief was knowing they had my back and should anything happen to me, they’d rally and take care of my parents and what needed to be done. A dear close friend enlisted the care of a department head at the hospital I was at the moment she learned what my status was. She and other friends-like-family were part of my strong support system. Another good friend and her family would make delicious fish dishes for me and drop them off at home so that I’d get protein, one of many other acts of kindness… And my best friend whom I’ve known for 20+ years took care of paperwork and other things for me. I never worried because I knew I could call her and voila, my ask would be done. And even though she lived with her family on the East Coast, I felt as if she was with me every step of the way too, just like my local tribe. I vividly remember the day she surprised me at the hospital. I was getting my blood pressure etc checked as was the routine every few hours. I was weak, felt especially helpless that day, like half the person I used to be, in a “I don’t know how much longer I can do this.” mood, and just in despair over how I was going to get thru the coming months being in such a desperate state when she walked in thru my room’s door and my jaw dropped…I cried in the silent heaving way that you later tell yourself you never want to cry again. Because it felt like I had been drowning and was being tempted to give up and then suddenly, like a miracle, I was saved. We sat together, hugged tightly, and cried for a bit. A cherished memory I’ll never forget.
My boyfriend (ex now) too was a vital lifeline. We had been having our own critical relationship challenges before the cancer happened, but he put that promptly aside and did the best he could to get me thru to the finish line, and beyond, helping me recover after, along with my family and close friends. Anytime I began to feel like just flesh and bones instead of a person (which was frequently), he’d make me feel as close to my old self as possible. He kept me sane too. I would try to shield my family and tribe from some of the thoughts/feelings, frequency of aches/pains I would have because I didn’t want to burden them with more worry than they already had (depression and suicidal thoughts are very real concerns for anyone dealing with health crisis, and although I didn’t have that, my family and tribe were cognizant and watchful). He would try and share that burden with me. Listening and letting me be vulnerable without always telling me to be strong (it can be exhausting to be told that when you feel like you have nothing more left to give), etc.; giving me hope with his jokes and teasing about how good I managed to look in my bland hospital gown. I will always be grateful for him too.
By now it should be obvious that I was blessed with amazing caregivers and support system. There are more memories of course — a younger brother and friends whom I’m grateful to too, a few dear ones who traveled from other states to visit with me, an Aunty (family friend) who drove around the city looking for orange gatorade for me one late night because it was the only liquid I could bring myself to drink. They all contributed in their special ways. That all being true though, my will to endure and live was really because of my parents. I know many people who fight such illnesses are heroic in doing so. I wasn’t a hero though. I had no intention to be one. My only thought thru the worst phases of my treatment wasn’t about me fighting and proving anything to anyone. It was simply just their love — I couldn’t let them lose a daughter in their old age. That would be cruel. They deserved better from Life. From me. Anytime I felt a call to let go because I was exhausted from battling the feeling of no longer being a person but rather just a sick fragile helpless body that was at the mercy of illness, infections, and medicines, I resolved that I couldn’t give up, I’d bear it one more day and it would be over. And so I held on.
Thankfully, we made it. I went into remission. I had survived and I started my next journey — that of recovery and getting my identity back. I have no words to express my gratitude and am humbled by my blessings. There are millions of people, both patients and caregivers, who will be able to relate to my personal experience and sadly many of them will have worse ones. It’s heartbreaking. And they’ve all been on my mind constantly from the day I started my treatment. This has led me to joining forces with others in solving problems they and I have faced, and asking the important questions, one being: “How can we shift the burden for all these people away from them and onto technology?”. Because taking care of health for loved ones and oneself is an unpredictable marathon. And along with money, it takes time, effort, and working effectively with others, people and ecosystems.
Given its proliferation in our world, it isn’t a surprise that cancer, like many other chronic conditions, is not a one time ordeal. Or that even for a survivor, it continues to exact a price. And while patients/survivors deal with ongoing burdens of taking care of their health and well being, caregivers are also not spared in dealing with their own related, consequential burdens. The need for caregivers doesn’t disappear the moment a patient is home and regaining his/her life back, or when a chronic condition is being managed for maintenance. It is there. They are there. Constant companions. Seemingly tireless do-ers — getting your errands taken care of when you can’t, reminding you of routine doctor appointments, nagging you to take it easy on your body because it’s still healing inside, checking in to make sure you’re not depressed, sleeping okay, and you’re eating well, holding your hand virtually if not in person for comfort, asking if you’re managing financially…essentially making sure you are fine.
“Fine” — it’s the most underrated personal state of being. If you’ve gone through a health crisis, being able to say, “Yes. I am fine” is a victory. I firmly believe that caregivers make the largest contribution to this win. And that virtual handhold when a caregiver can’t be there in person can sometimes be the difference in whether you’re in healthy spirits to face daily or weekly challenges, or merely just existing while moving from one hospital visit to the next, or from a personal phone call that don’t happen as often as needed to make sure you’re “fine”.
During the entire time my army of caregivers were taking care of me in and out of the hospital in various ways, to the capacity that they could, I noticed the stress that my parents especially went through because they were my daily constants. Their struggles made me realize how little support there actually is for caregivers. My parents are retired, we were lucky that way; but I thought of the additional strains that caregivers who aren’t retired have to deal with, especially women who often take on the bulk of caregiving activities and juggle it with the other demands on their time/energy like work, being a mother, in some cases being a student too. I didn’t like that in today’s advanced tech age, they should have so little help. It made no sense to me. When someone is thirsty we don’t look around for fancy solutions, we offer water; it’s so simple, easy, and makes a positive impact immediately. Tech solutions should to be the same way. They don’t have to be complex, full of frills, elaborate in addressing basic needs. They can start first with simple and easy solutions to problems that are universal and challenges that are faced routinely and deteriorate quality of life.
Here in the United States and around the world, we’re living longer lives. We all know this. It is a blessing. My papa is now almost 81 years old, so I get the privilege and am very grateful. But our increasing longevity comes with its own problems. The longer we live, the higher our chances to develop illnesses, in many cases, chronic ones like heart disease, diabetes, and cancer. This means more seniors with needs for more active health care. At the same time, as we continue to become better with things like remote work, resuming travel to pre-pandemic levels, etc. I suspect that more people will live away from their extended family members. And that means they’ll need ways to stay connected about what’s happening with the health and well being of loved ones; ways that are not invasive and are easy to implement. Bottom line is that the need for caregiving is only just increasing, as has the variety of challenges, and we haven’t been proactive enough in addressing those needs and solutions.
The pandemic brought its own additional bag of issues, forcing isolation on many and creating new health concerns as well as aggravating existing ones. At times like these, it becomes even more critical to let our loved ones know we care. We may not be in the same home or even city but we’re present, we’re aware. And for those living in rural areas or regions underserved by newer technologies and health systems in general, the past couple of years have been even more grueling. It’s worth mentioning that even outside of the pandemic induced challenges, the need for connection is huge. When I was in and out of the hospital for those months of my cancer treatment and during subsequent recovery, having a hand to hold on any single day was ALL I WANTED. Not food. Not entertainment. Just a warm caring human touch. And when that was not available, getting a text message was the next best thing, because I couldn’t handle lengthy conversations, especially not every day.
So how do we make better health management and this connection with loved ones accessible, dependable, easy to use and available, and uncomplicated? And how can we make it easier for caregivers and care receivers to work with the healthcare ecosystem to address concerns in a timely manner as well as proactively?
The health-tech sector is buzzing with activity in recent months to answer similar questions; it’s exciting to watch and I am on board to make my own contribution for those who want to live better quality lives and those who care about them and want to help. We shouldn’t underestimate making someone feel “fine”, it’s a step of “better” from where they were. Making those who matter in our lives know that we care, doesn’t have to be a daily call to say “I love you”, or go over a list of things to gauge how they are doing health-wise. As caregivers, you may not have bandwidth to do that as regularly as you may want to. Everyday life is demanding. Instead, it can be setting up a support system for them that requires less for you to do yourself. And where possible, using technology to help take care of tasks that are routine, so that your/ a caregiver’s time is spent on complex things that require more involved human interaction and touch. As my journey continues, I look forward to better health and well being for each of us. And because caregivers and caregiving matters to me, I also eagerly look forward to doing more to support this diverse community of remarkable people.
To all of you dealing with illness and/or being caregivers, including healthcare professionals, I salute you, you are amazing and this world needs you — thank you 🙏. To my tribe near and far (many more than I could address in this post), I adore you, thank you for being my blessings, and giving me new life and purpose. 🧡
Sending you my best.
ps Please forgive grammatical errors; I am not a writer and my style of written communication leans conversational. I welcome questions/comments and would love to hear from anyone who wants to connect.