A young couple was sitting in front of the doctor, anxious and at the same time hopeful. The doctor had an inscrutable expression but didn’t know what to tell and how to tell.
With great difficulty he nodded his head and whispered “results are positive”. The wife beamed and shouted “I knew it! Nothing is wrong with you. It is just stress we need a break and all shall be fine. Doctor I told him so!”
She heard and understood what she wanted to believe. To her mind, positive results only meant that all was fine, while in the medical world it means the person has the disease for which he/she has been tested. The husband with complete empathy, softly and lovingly held her hand.It only became tougher for the doctor, still he tried, “Madam, Sir is suffering from Progressive Autonomic Failure .It is called ShyDragger’s Syndrome”.
“What’s syndrome? Dragger’s means? What are you saying?” –The doctor repeated softly, kindly and with care.“Anyways so what do we do? It means medication, surgery, what? Is it genetic, stress, pollution, what?“Pat came the reply –” There is no cure for it, there is no known cause”…”How is it possible? Technology has advanced, medical science has advanced, there are alternative therapies”. The wife was stooping, gesticulating threateningly at the doctor while holding on to her husband. Like a reflex action she started kissing her husband profusely and muttering, “not possible, there are ways, I will find out and show you doctor. It’s a challenge, give me a year…”
The stoic husband stood up, held her in his still strong arms and started moving out of the doctor’s clinic.
This is not a fictional story but rather, it is the true incident of my life. My husband Arun had just turned 50 and was not keeping well – a series of unexplained incidents – sudden fainting, dizziness and blackouts amongst others.Many years of false alarms, hopes around spondylitis and low BP lead to the final diagnosis.
I thought that if I will cry he will be affected and probably he also thought same.Everything seemed normal, he was driving the car, I was sitting next to him, people were walking, driving, abusing, spitting, buses, trucks car, autos , everything was normal. Suddenly I felt very hungry and asked my husband to stop the car and we ate some hot samosas with tea from a roadside vendor with my heart crying out for normalcy.
Yes, I was in total denial and then furthering it as I was already planning my next steps to further the delusion that I had built. “Maybe the results got mixed up with someone else?”…“The doctor didn’t seem to be a specialist and it must be a wrong diagnosis.”…“We have been good, dutiful and self-sacrificing- how can this happen to us?”“Maybe I was too argumentative, may be it was tough for him to maintain a balance between his parents and me.”“He was suffering and I didn’t know – I don’t believe this. Why didn’t he tell me? Why didn’t I pick it up? It’s my own fault. God has punished me!”
Innumerable unanswered questions haunted me,the blame game started with no one keeping score, the entire universe seemed to be conspiring against us. The anger, dismay, helplessness and disbelief only made me more rigid. Being a pragmatic, action oriented person and married to another, we did what seemed only natural.
We didn’t talk about the condition with anyone, not even to each other. I was hiding the reality from our children who were studying in professional colleges as I didn’t want to impact their studies. My maternal instincts wanted to protect them from the pain that we were going through? I didn’t even tell his parents or my family. I don’t know why? I was numb, like an ostrich with my head in the sand wishing the trouble would go away.Did I think they will not be able to take it and I am the only one who is strong enough or have to be the rock? To deal with, to handle it, nay – fix it?!
We went to a series of Neurologists but received the same response. Then started the foray into alternatives – Ayurveda, Homeopathy, Yoga, Magneto Therapy, Acupuncture, Naturopathy and what not. On the other hand, he was slowly getting incapacitated – his calligraphic handwriting started deteriorating, slurring of speech and he was walking like a drunkard. He was getting nightmares at night and blackouts during the day. I didn’t know how to look after him as I was not only unskilled, unprepared but also there was very little information available. Remember this was the analog era
I was restless, irritable – always annoyed with the whole world. If anyone asked me anything about the condition, prognosis or his health even out of genuine concern, I would shout, make faces if I could not shout, get up and walk away or simply deny that anything was wrong. In simple terms I was like a wounded lioness licking my wounds. I was naturally judged and criticized for my bad behavior which further hurt me.I just don’t know how I was going through the days. I was as if in a trance, running around always thinking of the next task but in reality just running without any direction.
I thought no one knows our woes while the whole world knew something is wrong.The extended network of friends and family out of their kindness and desire to help kept coming up some helpful but some well-intentioned but fantastic suggestions. So started various prescriptions, tantra, mantra this temple, that temple, Puja, throwing of coal in water, to all kinds of crazy stuff. I went against my very ethos, my beliefs and convictions around scientific processes. Sometimes I did it as a last ray of hope and at other times, I argued or simply gave in to save my energy or just ignored. I was negotiating with the supreme power. I was moving in a vicious cycle of blaming self, others, God, slipping into self-pity. I was in a dramatic triangle of victim, prosecutor and rescuer.
Slowly but surely he was slipping away.I had sort of reconciled with the reality and was coming to terms with it. The acceptance finally dawned. The doctor gave us three to five years. Now, I was negotiating for at least five years. By now we had started talking about it but still as if it belonged to someone else. Increasingly, it was becoming difficult for him to maintain balance, control his bladder and colon. Adult diapers were not common then and at times a relative would bring it from the US as a welcome gift! Every day there was a new challenge. I had become a procurer, from daily needs to esoteric ones. I was carrying on my job as well due to our financial needs. On hind sight, it also provided relief and diversion. A much needed de-stressing avenue. Without knowledge and guidance, I was coping by hit and trial.
I was unable to take care of myself and I was totally into the role of a duty-bound, loving caregiver where I felt guilty if I even stumbled on a thought of some relief for myself. I didn’t want anyone to do anything for him. I was suffering from Caregiver Syndrome, if there is any such term. There was no time to pause and ponder. Strangely, I was also on a high of a warrior though it was a losing battle.
My doctor suggested that I should go for walks as I was highly stressed. Initially I resisted it as I wanted to be with Arun all the available time. Later I conformed as it came from a doctor. It helped me tremendously. A friend suggested that I get a weekly massage and I was aghast! It sounded like blasphemy! Once I had a very bad throat but I refused to take any sedative due to fear of oversleeping. I was paranoid that I may not lose him while I was away or sleeping. I was all the time evaluating myself “am I doing enough”?
It was only later, much later, that I recognized the impact on me. I lost empathy for anyone as to my mind my trauma and journey was the most tragic saga in the world. Only when I opened my mind that I found that others have faced much tougher challenges. I had absorbed it thinking it not only as my trauma but for the entire family, even my husband’s trauma. I didn’t seem to be even realizing what he went through. He never complained or expressed his fears. Maybe I was so self-obsessed that I didn’t give him the space to express himself? Though I was tending to him physically, he was still providing the emotional support.
I was burnt out. I was socially isolated as I thought no one came forward to help while others found me rude, temperamental and discouraging. I was bitter as I focused only on those who I felt had let me down and not on those who quietly walked along with me. I was suffering from compassion fatigue and disease or death stopped affecting me.
There was no time for transition to the new role of a caregiver or maybe I didn’t allow myself to grieve or mourn. I thought it was courageous to keep my emotions under control little realising that it was not control but just becoming numb.
This is the most important part of my life which left a mark on me in many ways. However today, there is peace within. I know that I did whatever I could do at that time and with that mindset. I don’t have any regrets about that phase today. I know there is no “best” way. Death and disease are facts of life just like birth and health are. I have forgiven myself as well as others.
About The Author
Kumud(Ashu) Issar, is a postgraduate in Botany, a professional member of ISABS, and has facilitated many human process labs with corporates, social and education sectors like BHEL, MDI Gurugram, IIHMR Jaipur, EMPI and social organizations like CINNI, Aklavya and Bare Foot Academy. Marriage and two children couldn’t dampen her quest for knowledge and learning. Proving the cliché that learning is a lifelong process did her Bachelor’s in Education after a gap of seven years and found her mission and passion among adolescents with in the school system for 32 years. 16 years later, she completed a Diploma in Journalism to add professional expertise to her passion for the school publication.
A diligent and the primary caregiver of many family members from early adolescent years, she has practical experience of dealing with bedbound terminal patients and their caregivers.