Issue 014: Lean on Me

In this letter: Alleviating the Burden, Culture vs. Better, Feeling Fulfilled

Assalam o Alaikum friend,

I hope you are doing well today, dearest friend. I am writing you today about some lessons from a book currently propped open next to me. It is making me realize how important it is to lean on others while going through difficulties.

01 // Lean On Me

I picked up a fiction book recently which took me back in time into cultural practices that, as a web, prevent us from moving. They hold us stretched uncomfortably to accommodate its patterns and stop us from growing into our full potential. The book dealt with the concept of illnesses and how people, desperate to alleviate the pain of loss, go back in time to meet those who have died. Their ache was compounded by the fact that they were either unaware of the illness or were not told of its gravity before. They thought the sickness was temporary. They thought it was not that bad. And yet a few weeks or months later, the sudden loss shocked them into a complicated grief which could only have hope to be alleviated should they see that person just one more time.

And so they sat in the chair which facilitated that for them and braved facing their loved one who was still alive then. They both sat with each other, pretending and hiding their pain, hoping that doing so will ease the pain of the other. Sometimes they found relief only through sharing what was in their hearts. The book is written by a Japanese author, held in Japan, steeped in cultural voices that seemed familiar to me as an Asian woman.

At the same time, I picked up another book. Non-fiction this time that shares stories of families with illnesses. The book is written by professionals for professionals who can learn from those stories what is needed to help these families move through their destined path.

“Illness is both a threat to agency and communion and a ‘call to consciousness’ to deepen these domains of life.”

The stories in the fiction book reminded me of my own family’s stories where people have hidden serious diseases from another, delayed delivering tragic news, sat under the psychological burden alone with their diseased body to carry it all in hopes that their family will suffer less. In almost all instances, the pain of the surviving family is enormous. The caregivers are left feeling helpless and confused, unable to understand why their loved one is not getting better.

This confusion, friend, is not necessary. It causes more harm and complicates the grieving and bereavement process. This may be contradicting what you have grown up with and, like many cultural things need to be, this is something worth unlearning. So I want to encourage those who have been delivered the news to share it. Lean onto your support system and allow them to carry it alongside you. Humans are a lot more courageous and resilient than we want to believe. It is shocking in the beginning but alongside that fear, comes strength; with despair comes hope; with burden comes relief; and with isolation comes connection.

“Working with families and illness is an intense experience, an emotional roller-coaster ride that is both draining and empowering. Families’ strengths and optimism are noted alongside their tragic and sorrowful responses”

The thing is not happening to you but also to those around you. Whether you choose to include them or deprive them, they are going to stand on the other side of you wondering what more can they do. This helplessness adds onto the pain. However, if they are empowered alongside with you in knowledge and lean on each other to create a network of support, rather than one of entrapment, then the story changes even as the plot remains the same. And, perhaps most of all, it helps them construct a story that brings meaning to the experience. Meaning is what helps to heal and the sooner that is constructed, the easier is the transition from what was to what is.

Secrecy, on the other hand, is generally considered detrimental in family therapy. Secrets remove connections, hide realities, and cut off resources. Secrets related to illness can be extremely painful. Share with the patient, whether it is an adult or child, everything that is happening to them throughout their illness. And share with others what is happening to you. The following passage comes to mind where the now-therapist recalls her experience as going through the terrifying epidemic of diphtheria which took the lives of all the children in her village in Africa, leaving her as the only sole child survivor. As a child, adults thought to keep the realities of her illness from her which resulted in more terror and suffering than what was brought by the illness itself:

“The isolation and fear of those visits to the hospital for radiation of my thymus gland still haunt me when I am ill. I was acutely aware of being alone for the treatment after the people wearing lead aprons had left the room. The sound of the machine they were all avoiding terrified me. […] I remember an eternity of terror in that room with the glass walls through which everybody peered at me. I don’t recall any explanation of what was happening at the time. I remember thinking that since I could kill other people, maybe this was being done so that I would no longer be dangerous to them – so that I would be sanitized.”

The glass walls became a prison for her simply due to not being informed. This can happen to your loved ones as they see you live through the illness, it can make them feel that same terror and helplessness. What we want them to feel is togetherness, compassion, empowerment, and meaning.

Walk through it together. Lean on each other. Allow them to come to terms with the difficult news and realize how supportive they can be.

Life is too short to go through it alone.

02 // This is good

I feel fulfilled, alhumdulillah. Whether it is the fact that I am reading for pleasure, or enjoying what I read, or even engaging in expanding my knowledge base, these days I am feeling so fulfilled. You see, I held the bachelor degree in my hands when it came in the mail and felt a tremor of excitement and dismay. Excitement because this journey had not come without challenges and dismayed because I knew that the next step is still not visible. The paper in hand seemed like a ticket that only the wealthy (or those that were okay with interest-bearing loans) would be able to cash in.

Now as I sit on the computer glancing over texts, or repeatedly scribbling over that one thing that I am supposed to remember, I feel fulfillment that is closely attached to gratitude. I am busy and I am happy for it. It is also the first time that I am not drowning in misery and fatigue due to coursework. I was granted special accommodation that allows me some flexibility to turn in the assignments, something that I have used very graciously. All of this making me feel like I can do this. It will take me longer than expected, but insha’Allah, I will finish it.

These are the thoughts I had today that I wanted to share with you. I hope they benefit you in some way insha’Allah and give you the strength to reshape learned cultural beliefs into something more beneficial. Below is the book the excerpts are from, in case you are curious.

Sending you lots of love,

-S

Quoted Book: