I used to wake up every morning to the sound of sitar, my mother’s music. Every morning the strings resonated to the familiar notes, taans and raags. I recall her, sitting with her legs crossed, on a carpet in the drawing room; the sitar balanced on one foot and supported up by the other knee. When she played her eyes would close, mind in a trance, feet tapping to the beat – as a child I would curl in her lap and try to catch her moving, rhythmic toe… the moving limbs.
My mother is 68 this year. She has been suffering from HD since the past two decades. She was clinically diagnosed in 2005 when she was 54 though the onset was earlier, most likely in her late 40’s. For over two decades she has been fighting this disease, and we as a family have been hurting from her loss.
When symptoms of HD first started manifesting, it was difficult to differentiate between the movement of her inner music and the compulsion of the disease. Her fingers and toes would twitch even with no music around. Not that as a family we could identify clearly when her onset was… it started with some small things. A slip on the string of her sitar, a false note, impatient movements; but then she was always an impatient person. Emotional outbursts, raging anger, impulsivity; but then she was always a temperamental person – an artiste.
A fiercely independent woman, who made it a point to nourish her spirit with all that brought her joy – dance, music, arts, literature, friendships, family and food. She was beautiful – volatile and yet very vulnerable; soft hearted yet very tough. It’s only now, as a grown woman that I can understand her fight. The fight of a passionate person to hold on to her fleeting abilities, to grasp life wherever and however possible. The tremendous fear and loneliness of this terrible plight.
While she was very brave about her diagnosis, she was also terrified. I remember conversations around the bravery – she continued to play her sitar for years after even as her notes got disharmonious (she has a Guru and friends who supported her unconditionally through this), doctors & medicines, alternative treatments, yoga (till she could manage), writing her own diary, spirituality and even painting. But there was little space to engage with her fears, externally and internally. Almost as if allowing herself and us to address these fears would bring finality to her predicament; it would mean staring at that inevitable black hole.
My father had passed away in 2004 after prolonged illness. For many years prior my mother had been his primary caretaker. In the initial pre-diagnoses period of HD, my mother’s and all our energies were focused on my father’s health. My elder brother lived in the Netherlands at that time, I was a teenager – there was no one around who could contain her anxieties and fears. After my father’s passing, she lost what had been her psychological anchor for a long time.
Now when I look back, at that life filled with stress and fears, its little wonder that her HD onset and progression has been so rapid. Her mother, my grandmother, who had HD had different behavioural symptoms and progression – she was less reactive and was more mobile until her last stages. My mother on the other hand would get aggressive and react unpredictably at times. We now know that the manifestation of symptoms varies, and much of it depends on the patient’s psychosocial world and experiences.
She fought hard when we insisted that she stop driving her car – a driver was employed to take her for her daily rounds. She felt oppressed when we asked her to stay away from the burning stove or not eat certain food. Slowly, as she started losing grip in her muscles, she had to keep the sitar aside. It broke her heart, and ours too. Over the years she lost the ability to read books – she would read a few sentences in the newspaper every day and we made that our routine. If the fonts were big, she could manage it smoothly. She enjoyed painting and for a couple of years painted canvases with assistance from an artist.
I marvel at her fortitude – she would speak openly and trustingly about what she could and couldn’t do. And yet there was no direct expression of her fears, her horror of losing her mind and body, feeling lonely or being abandoned. That horror would come up in the middle of the night, when she would suddenly wake up and wander around the house, bang hard on my door – some inexplicable thought or anxiety would have haunted her mind. Or the years she spent crying and screaming through it all – the change in dosages, neurologists, psychiatrists and her own internal hell. Through it all we maintained the mantra – at least she’s not in pain. Now after having gone through my own battles with mental health I know more of her pain, not as an idea but as tangible and very real.
Today she is bedridden in diapers, in a hospital bed with railings around to prevent her from falling. A couple of times previously she had bad falls, which led to further decline in her mobility. Over the years swallowing food has become difficult and her speech has gotten garbled. Yet she loves food and wants to constantly talk. We have 24 hours help for her daily routine – bathing, feeding, medicines, diapers etc. When I walk into her room, her face lights up and she clutches my hand. She responds most to physical touch – caresses and kisses, bright voices and music. We try and keep her world happy, though there are days when we fail in that. Some days the stress gets the better of all of us. As a family – though we are conjoined in this inheritance, we are also ruptured by it.
There are days when I have tremendous anxiety around our future; years of depression and hopelessness. I feel unable to imagine a concrete possibility for anything. If there is such a thing as incremental death, where you grieve for every bit lost – then this is it. I miss having a conversation with my mother, going to music concerts with her; the small and big parts of my life where I continue to miss her presence. And yet she is there.
For many years – I have been her caretaker emotionally, her pseudo mother and guardian. I remember all the fights and incidents where I would repeatedly tell her not to do something for her own safety, her reply would be – ‘I am your mother, you are not my mother.’ Her mind remains sharp, her body otherwise healthy. If it were not for HD she would be self-sufficient and whole. Instead she is witness to her own degeneration.
Hope comes from looking at the work being done today to create awareness for this disease. From looking at my aunt, my mother’s younger sister, manage her own onset and her determination to support this cause. We keep waiting for a cure, for some means to curb this decline. In the meantime, sharing our stories and reaching out within a community seem the way to find some healing and support. I often wish that my mother had such access, that at that time we could understand and reach out to more people. If she as an HD patient and we as her caregivers had more empathetic and nurturing systems, maybe some of her pain and fear would have found safe spaces of support.
