The Gift of Receiving Care

Is it Really Better to Give?
Accepting help, offered or requested, connects people to one another, often unpredictably. Consider the emotions you derive from your own experiences on the receiving side of someone’s heartfelt giving. It’s so much easier to define our emotions such as satisfaction, graciousness, love, friendship, and joy when giving to others. Paradoxically, many of those we consider “giving” individuals have the most difficultly in receiving help. Even compliments and gifts can seem regarded as uncomfortable as shyness and embarrassment meet with our words. Yet we give to bring about a positive result. Then why do some of us on the receiving end regard “taking” as a negative state, accepting gifts of the heart with feelings of neediness, dependency, expectancy, and worse disappointment?

As far as caregiving goes, on the surface our intentions usually mirror the best possible interpersonal upsides of acceptance. Receiving graciously in this interaction promotes deeper intimacy in our relationships by suppressing the need to control others and situations, and hopefully heartfelt reciprocity when it’s the giver’s need that we fulfill. I’m guilty, if nothing else, of giving until perhaps my friend, relative, or partner feel overwhelmed or suffocated. On the other hand, I’m absolutely terrible at accepting assistance of any kind.

Why such tension arises between give and take became clearer to me only recently in my continuous self discovery process. It’s more important to me now to better communicate with those I respect and love the most. With a metastatic cancer diagnosis it’s imperative that I humbly – and graciously – accept aid, comfort, support, and help with an open heart and mind. My well-being depends on it. And from various places, including anonymous sources.

But how do we take when we, especially women, are rewarded as caregivers? This past month I learned through the process of giving how to better accept care and help gracefully and with deepening gratitude. Allow me to walk with you on a path for a while. It’s a road that led me through caregiving/ care-receiving experiences after three and a half years post metastatic breast cancer diagnosis. My experiences demanded I understand why it’s so critical to graciously receive from others for my wellbeing. My understanding of the motivations that pushed away help, also allowed me to become a more compassionate caregiver. The importance of being present and truly listening allows me to focus on giving what’s needed, rather than what I believe should be given with uninformed assumptions.

Three Categories of Care
Here’s a breakdown of the major categories without exception, in which my own offers of aid have come (your mileage can vary):
1. Personal care from friends and family, some of whom offer very general lending of hands, including the insincere proffering of “whatever you need I’m here for you.” In my experience, if a friend or family member can emotionally handle me as a mirror of their own mortality and remain an active part of my life, then their help requires listening to my needs and wants. The best listeners also use specificity in their offers, and if I actually accept, rarely matters. They also follow up with true execution. I confess I’ve resisted offers of personal caregiving due to the embarrassment of possible disappointment, or on the flip side, the fear of a closer interpersonal relationship. No, it’s not a very good modus operandi.
2. Medical and psychological assistance, which are somewhat compulsory to the process of becoming a cancer patient. This includes palliative oncology specifically designed around my wellbeing, not just oncologists and pharmacists.
3. Institutional assistance from non-profits, various levels of quality cancer programs, and financial aid. On the whole these institutions focus on the process of receiving what’s been offered and thus requested and result in little more than paperwork. The few instances when the promise of assistance met with what I was led to expect. Indeed they’re equally as rare as exceptional. The warmest fire in this dark cave I entered upon my MBC diagnosis: the Cancer Help Program at Commonweal. http://www.commonweal.org/

Prior to the current generation, most of us had been brought up believing we are valued for what we do for others and what we do for a living – not what we do for ourselves or for what’s given to us as a deserved prize for our mere existence. We won some we lost some. Our wins became the best way to show our parents, teachers, and higher ups our worth. What a deceiving reflection of the strength or weakness of one’s character. Conversely, we typically don’t understand how our gratitude and graciousness in the act of of receiving strengthens and broadens our own humanity. It’s in receiving we can really find the value of true spirit. Rather, we associate receiving with guilt, even with “guilty pleasure.”

Such a stark contrast to the help we need, and in my own case, silently crave, given cancer’s devastation of life, friendships, family, and finances. What a mess.

Care Giving and Care Needing
Black and white, 0 and 1, open and shut, sick or well. The gray and pink and purple and cloudy views make life vibrant and, at the very least, interesting. Yes, computer programming raises the sea level on the importance of valuing black or white thinking: on (1) and off (0). Yet human beings, like the world we perceive, are alive with all the hues of color and the levels of clarity or opacity of our emotions, we find windows ajar, just enough for us to open wide and allow the sunshine to enter or to close the shades tight to shut out the light.

If we choose to open those windows, the world invites us to take a look outside, where we may also find other people’s pain or needs beckoning for us to help. While those times may overlap with our busy schedules of “doing”, we can easily make room to give of ourselves including physical, emotional, and financial gifts. My home recently overflowed with giving when a friend underwent a total vaginal hysterectomy (TVH). Her stay with us included pre-op appointments as well as the time it takes for at least the first few weeks of her subsequent recovery. She’s become receptive and gracious in understanding that her needs had to come to the forefront over the daily duties of motherhood for a little while or she’d lose her ability to go back to a life of supermom and caregiver.

As a mother of three great kids, whom she raised primarily on her own, she knows no boundaries when it comes to giving. She’s the kind of mom we all wish we could have in our life if our own was not able to meet our needs as children. My own case included. She and I came to know one another through her eldest daughter, Arihana, who fought Hodgkin lymphoma for five years with her mother at her side. We met when she was dating my oldest stepson and we tightly bonded through the unspoken language of cancer patients. Her mother needed to know “who this woman was.” And so she did. Fast forward a couple of years and our friendship grew and blossomed into a trusting and lasting close relationship. I came to find her an amazingly resilient woman and see her in not only as defined by her role as “parent.”

She got through the TVH – and booted from the hospital after only 23 hours, which the insurer deemed the medically necessary recovery post operative period of time. I was enraged at the neglect of our patients as I truly saw, once again, how broken healthcare in the United States – first world country, indeed. But that’s for another post. Back to my friend – she needed about one month’s time to calmly and peacefully recover just enough so that she could return to her role as a mom again. It really takes about six months to heal the internal physical wounds from this ordeal, if the psychological and endocrinological wounds ever do fully heal. I had to make the notion abundantly clear that she needed to find a comfortable way for herself to become accustomed to accepting help, at least temporarily. She didn’t have to ingratiate herself to me for my caregiving, and her recovery in and of itself became my reward. My ability to understand patient advocacy and quickly learn and integrate medical knowledge strengthened my already motherly demeanor. I understand now, as she held a mirror up for me to reflect upon my own shortcomings as a patient, that I am someone who can not accept help easily. Aghast, I also saw the pain I had inflicted on others in my life for rejecting their help and care. Feelings of guilt, shame, and just bad form came over me in waves. Through the looking glass of her resistance of my care, my own notion of receiving with humbleness and gratitude changed significantly.

Perhaps I would have done some things differently during the darker times of my husband’s depression. I reconsidered my role of caregiver, which I thought was already second nature to me. I am learning to become the person my husband needs not the person I assume he needs as over the past three and a half years. He suffers from dysthymia and anxiety brought on by his lifetime battles with OCD. How much more emotionally debilitating than to see someone you love so much suffering and in need, yet reject the care offered and sometimes given without asking? At times I had to do so against his confrontations and anger in the name of physical health during periods when he wouldn’t eat or drink. Without my care, he’d have damaged himself irreparably.

Men don’t accept or ask for help. They believe it’s weak. Brought up to provide not to accept support, to him this would leave him with an empty hole of vulnerability. Vulnerable to being further emotionally pained. And more pain he doesn’t need. I’m grateful for his support before and after my diagnosis, but he sees it quite differently through a lens of depression. Those glasses darken even the most selfless of acts into feelings of suspicion and cast a pallor of doubt onto anything outside of normal day to day wifely duty.

An Infusion of Love
With cancer we lose ourselves to our disease. Our human-ness is replaced by our patient-ness.

This week after finishing up at the infusion center getting my port flushed and bloodwork done, followed directly by monthly injections of Faslodex and Xgeva , I feel tired and sore and my mind wanders into thinking about my mortality and metastatic cancer. Just as I was about to leave Stanford cancer center, My friend, with whom I’d learned so much about receiving through giving, sent me a text asking if I would like to have her treat me and my husband to a delivery of dinner for the three of us rather than having to cook. In a millisecond, and without thinking, I sent her a text expressing my gratitude for her understanding my needs and graciously accepting her dinner offer.

I didn’t feel like she rejected the food I had cooked each day, nor did I feel like my love of cooking and my skills as a home chef were being slighted or diminished. I’m not the food I serve, per se, and I truly feel a very humbled warmth by showing love through nourishment. But my cooking skills aside, which represents only one facet of who I am as a human being, I need help far more than accolades on these injection days and during the few days thereafter.

It took some soul searching to admit this to myself and to discern the true meaning of caregiving from my own egocentric resistance to receiving, as well as a childish need for praise I never received while growing up. Judgment of what I do versus who I am drove my overwhelming need to give in the past. I am much happier today and more comfortable with infusions of true help and caregiving, which I accept as it’s offered: kindness towards me in the most human and most vulnerable experience in my entire life. Cancer isn’t a gift, but I give myself the gift of insight into my emotions and my actions arising from a daily look into the infinite canyon. And giving happiness to ourselves sometimes can be the best gift of all. My smile, rather than my tears, brings people who care about me much closer and I’m more open, and yes vulnerable, to receiving love than ever before. But I’m comfortable now with that kind of vulnerability.

For this I am grateful, and I thank you for giving me your attention.

Ilene

Female. East coast transplant living in the Bay Area of California. Living with Stage IV breast cancer. Married to the coolest guy in the universe who occasionally suffers from serious depression. Love my stepsons, although I never thought I'd have that thankless job - ever! And my best friend Simon is also my cat. How I have survived with stage IV: treatments including chemo and surgery; palliative oncology; tenacity; a dark sense of humor; support groups; and my newly reinvented career as a vintage and antiques maven. Some days I miss the old me who led a well respected and well paid life as a business strategist in high tech. So much for that. I blog to simply share my experiences and my poetic approach with others who have cancer of any kind or with their care givers and those who love them. If one person at the very least finds a little commonality or a friend out in the ether tor a smile, a common nod about this experience, or even a link to assistance, then I have accomplished a small but extraordinarily meaningful goal. Go team.

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