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Walking towards hope

R Sriram Srinivas, who has multiple disabilities—mental retardation and spastic diplegia—takes a breather during his yoga session at home. P Settu, his yoga therapist, who has been teaching Sriram two years now, says that Sriram used to be inattentive and restless, but now follows instructions well and has mellowed down significantly.  

 

 

Images and text by Naveen P M

Walking towards hope (2/9)

M Vanitha, Sriram's teacher, helps Sriram wear his dance apparel before the start of the 'World Differently Abled Day Cultural Programme' at Don Guanella Special School in Chennai. Due to Sriram's condition, simple tasks such as putting on clothes can become a chore and he often ends up needing some assistance. 

 

Walking towards hope (3/9)

Sriram rides his bicycle—fitted with a custom-made backrest—flanked by special education teacher, G V Arumugam. Arumugam has known Sriram for 15 years and was initially hired to teach him basic reading and writing skills. On Sriram's parents' request, he started to assist Sriram in walking and then taught him how to ride a bicycle so he could improve his muscle tone. 

Read Sriram's story here

 

Walking towards hope (4/9)

R Devi helps Sriram read a clock at Sai Sri Ram Training Centre. Sriram has difficulty reading and writing even basic words, and has a hard time grasping universal concepts such as time, date, and money. Devi is Sriram's favorite teacher. Sai Sri Ram Training Centre has eight students with special needs, two teachers, and a domestic help. The school functions from 10 am to 3 pm and keeps the students busy with a plethora of activities such as coloring, computer games, and yoga.

 

Walking towards hope (5/9)

M R Karthik, physical trainer, subjects Sriram to one of the many "balancing exercises" to improve his balance and correct his "scissor gait". Karthik has been training Sriram for the last two years. "In the beginning, Sriram could hardly stand for a minute on his own and displayed a lot of traits commonly seen in persons with Intellectual Disability (ID), such as lack of eye contact, droning, drooling...," says Karthik.

Read Sriram's story here

 

Walking towards hope (6/9)

Sriram and his classmates from Sai Sri Ram Training Centre perform to a medley of Bollywood songs at the 'World Differently Abled Day Cultural Programme' held in Don Guanella Special School, Chennai. P Dharani Kumar, a professional choreographer, composed the dance moves for this performance. He visits the school every weekend to teach dance to these students. "Sriram usually has trouble recollecting and executing my dance moves but he stepped his game up through some spontaneous moves," he said. 

Read Sriram's story here

Walking towards hope (7/9)

Sriram is ecstatic after receiving a silver medal for the Standing Long Jump event. His driver, D Alvin (right), and Sriram's mother, R Vanitha, gather around to congratulate him, at the Special Olympics Sports Meet held on YMCA Grounds, Chennai. Sriram shares a special bond with Alvin and the two can often be seen engaging in healthy banter. 

 

Walking towards hope (8/9)

Sriram does a lap of backstroke at The League Club, Chennai. His parents introduced him to swimming at the age of seven after a doctor suggested hydropathy as treatment. Sriram has been training under U Sathish Kumar, swim coach for children with special needs, for one year now. Sriram won four gold medals in as many events at two swim meets for para-athletes held last year in Tamil Nadu.

 

Walking towards hope (9/9)

Dr J Paul Devasagayam, Area Director, Special Olympics Bharat, Tamil Nadu, reviews Sriram Srinivas's progress with his mother, R Vanitha, during one of their monthly meetings at his 100-square-foot office in Purasawalkam, Chennai.

 

Depression: A caregiver's malaise

A survivor talks about how she dealt with her anxiety and depression as a caregiver
Aruna Raman

I am every woman – a professional who thrives on teaching, pushing the boundaries and nurturing young minds, an individual who plays multiple societal roles, an armchair traveler, who is now starting to actually travel more often, and a reluctant subscriber to free will. In addition, I’ve been plagued by depression and anxiety issues all my life, which have sometimes, been debilitating.

I’ve never had an opportunity for a resolution – every breakdown has necessitated "putting things to bed right then," rather than dwelling over matters and seeking help. I don’t blame my immediate support system ­– I grew up in early '80s and '90s India (my teen years and 20s), when depression and anxiety were equated with madness, leaving little scope for seeking help. However, about two years ago, I was thrust into a life-changing situation – some important people in my life were diagnosed with life-threatening conditions in quick succession, and I was forced into the role of either primary or a secondary caregiver. During the day, mundane tasks would occupy me – bill settlements, instructions, and doctors’ appointments. At night, a thick coil of fear would firmly bind me and refuse to let go. My own anxiety issues, coupled with the need to stay strong, ate me from the inside. I had a dual battle to fight.

Many of us have been catapulted into the role of a caregiver under sudden and adverse circumstances. While the primary victim of an illness or accident becomes the center of attention for friends and family, the caregiver lurks in the shadows, battle-weary, and dealing with complex emotions.

A caregiver is the primary interface for medical professionals, the family circle, well-meaning friends, and financial entities (including insurance companies). Yet, the expectation is that the caregiver must handle the situation with a degree of composure, without a thought for their own concerns, health or uncertainty. In my case, my inability to forge through everything, coupled with own emotional issues made me a lesser person, sometimes to others, sometimes in my own mind.

However, I slowly clawed my way back, thanks to my circle of care, an honest assessment and articulation of who I am as a person, and demanding happiness and dignity every single day. In practice, here are some tips that helped:

  • Comfort with medical care providers – It took me a long time to realize that a doctor is a service provider, and is on equal footing with service seekers. Doctors come in all stripes. I have most respect for those who don’t say much, have a calm demeanor, and project the image that I can place my life, or the life of a loved one, in their hands. More often than not, I’ve encountered medical professionals who are extremely competent, yet brusque. As a caregiver, I once suggested switching a doctor after a rather morbid interaction. However, the person I was caring for was comfortable with that doctor, so once I was sure that my loved one was being taken care of, I stopped accompanying them to meet that doctor.  
  • Dealing with blank noise – It is natural for people to visit someone recovering from an illness, and their caregivers. There are those who care, and then there are random people who reassure you that someone else has had it worse. A good friend had a novel trick to deal with this – she would metaphorically switch on a favorite song in her mind to drown out the blank noise.
  • Release – Caregiving is physically and emotionally draining. There’s often guilt associated in indulging yourself. I remember the time when my hands would tremble while shopping - “do I deserve this?” However, I soon realized that in treating myself well, I was actually building myself back. I also realized that I should take every opportunity to cut loose – even if it meant getting teary-eyed or ranting. I once broke down because I thought life was being unfair to me; it was fueled by a leaky faucet. But I needed the release, as it followed months of bottling up.
  • Self-love – Caregivers often relegate their needs (or are expected to). However, there are no prizes for martyrdom. A few thoughts:
    • Since I was in the vicinity of life-threatening illnesses, I became acutely aware of my own mortality. Being prone to depression, my fears compounded even further. My fears rendered me undesirable company and I lost friendships. However, it took one champion who urged me to acknowledge that my fears were natural. I slowly moved to a phase where I would face my fears and then counter question them – “So what?” Soon, the train of “so-whats” led me out of my darkness.
    • Caregiving is about alienation. I had this fear that something untoward would happen if I wasn’t by someone’s bedside at all times. A breakthrough occurred when a well-meaning relative explained to me that things will happen (or not) in my presence or absence. I soon learned to seek help and take time out. I took myself (or friends) to a movie, met my close friends at every given opportunity, made spa appointments, and willed myself to move – which soon became a commitment to myself to stay fit.
  • Seeking Help – A good friend once remarked, “It is harder being a caregiver because of an indeterminate understanding of the person’s state of mind. The person in treatment at least has a set recovery path.” My recovery as an anxiety-afflicted caregiver started from adding people to my care circle – those who listened to me without judgment, and promised never to give up on me; mental health professionals who helped me connect with my own self-worth; harsh critics whom I’ve pulled away from, but still meet now and then (yes, I am thankful to them too!)
  • Speaking out ­­– It took me a long time to speak up, because I thought, 'How can I be in greater anguish than the patient?' At some point, I decided to take a chance and disclosed my deepest fears to my care circle. It helped build strength. As my healing progressed, I started actively speaking out about my anxieties in a matter-of-fact manner – as if they were a part of me, and not something I had. Initially, I would have an anxiety attack after each interaction, fueled by “What will people think?” I slowly came to realize that I was afraid of my own review of myself; people weren’t dismissing my issues, some even shared their own experience of personal pain and anguish, and I ended up with lasting friendships.

My journey is by no means over ­– the ones I care for are doing well, and I know that my struggle with depression and anxiety is a lifelong one. However, I am finding strength in my own voice and will -- one day at a time.

Aruna Raman is a social innovation professional currently working with an American university. She tries to practice mindful living on a daily basis to cope with her anxiety and depression.


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