Hmm! Are you sure? I’ve heard this before!

After approximately four years of hearing several general practitioners reassure me, I did not feel comfortable with the consistent diagnosis. Evidently the strained, strangled like sound of my voice was nothing more than a stress related, nervous disorder. The consensus of medical opinion was this voice problem would most probably continue for as long as I remained in highly stressful employment positions.

Okay. Stress management routines and relaxation techniques became focal points of daily life. Strangely, with improvements in workplace environment coupled with well planned down time at home, including a regular exercise program and fulfilling interests in craft work, voice quality just did not improve. Hmm! Was something sinister developing here?

Next annual breast screen appointment provided an answer! Diagnosis of breast cancer confirmed following a mammogram. Well. Could the funny voice be somehow associated with cancer? After all, being one of four siblings all now diagnosed with cancer is not a good record for any family. The surgeon, interested in the funny voice thing, needed to know if there were any obstructions prior to mastectomy surgery scheduled for three days time.

Video fluoroscopy, better known as barium swallow x-ray, confirmed no indication of obstruction but also confirmed mild dysphagia. There certainly was a history of fluids sometimes ‘going down the wrong way’! Following successful surgical intervention and on-going treatment for some years, the old funny voice thing just kept on sounding stranger and somewhat intensified. Then, referral to an ear nose and throat (ENT) specialist.

Wonderful news! Sinus drip causing voice change. Nasal drops would have it fixed up in a jiffy. Yeh? NO WAY. About six years had passed at this point. Time for another ENT opinion.

Well. How fortunate was that. The guy was really with it. Been there, seen this before. No worries. Daily gargles with a pine fragranced concoction combined with brief speech therapy intervention would have the problem sorted within two weeks. My God. Easy. How come no-one else had thought of that? Guess what?

Depression, depression, depression said the next general practitioner, some years after the gargling genius’s expert opinion! Following another year of feeling zonked out and drugged to the eyeballs, prescription and pills hit the rubbish bin. Now going on for 13 years or so of making rasping, gasping and croaking, sounds when trying to get words out! Then tragedy really struck!

My husband, my lover, my friend. Diagnosed with end stage renal disease and end stage cardiac disease. Three years of intense treatment and all that goes with it. One of the last medical appointments my husband had was with a neurologist. That appointment seemed to focus more on my voice than my husband’s medical needs of that time.

“Yes, yes. I’ll come and see you one day. Just don’t have time now.” Then my husband died. We spent the last 9 hours of his life in the Intensive Care Unit (ICU) of a hospital. I had been in the UK for three weeks of respite following three years of full time caring for my husband. The day I returned he had been admitted to the ICU. We talked and talked about so many things, including the doctor’s comment about my voice. Eventually, my husband asked me to step outside for a while giving time for a brief rest. With a firm embrace and exchange of the “I love you so much” and “me too” kind of words, I stepped outside. Within minutes I was recalled. My husband had fallen back against the pillows and could not be resuscitated. It was three weeks past our 43rd wedding anniversary. I was shattered. In particular, I thought about his concern that I follow up with the neurologist about the funny voice when he was so very ill himself.

Within a few months of my husband’s death I followed up the neurology visit. I wasn’t very enthusiastic about the appointment. Heard it all before – or so I thought! A NAME! HE ACTUALLY CALLED IT BY NAME! Spasmodic dysphonia. What the heck is that? He said something about differences from the norm. Second opinion required by a specialist in Brisbane, several thousand kilometers away. No worries. ON MY WAY!

Following intense diagnostic procedures over a period of approximately three weeks, the diagnosis was confirmed. Atypical adductor type spasmodic dysphonia with some additional indicators of cervical dystonia to be monitored over time.

TREATMENT. Oh, what heavenly sent joy! Following the first treatment I just about skipped back to the motel and telephoned all my family. Not supposed to use voice too much that day but what the heck! EVERYONE UNDERSTOOD WHAT I SAID! With tears running down my cheeks I found myself saying from deeply within my heart and soul, “thank you God for your blessings received by me this day. Thank you, thank you, and thank you.”

Then and there began a most wonderful journey of healing, hope, purpose and joy. Gone was the intense feeling of frustration. Gone the embarrassment every time I tried to speak. Gone the sense of shame resulting from thoughts it was all in my mind! Gone the thoughts that I did not want to be in this life anymore!

Ongoing treatment has led to little trip-ups along the way. I will share some of those experiences with you as time goes by. Meanwhile, I have wonderful memories of times spent with my husband and our five wonderful children who now have most beautiful families of their own. Recently retired Federal Opposition Leader, Kim Beazley, said it how it is. Family is everything. How wonderful it is to have voice to speak with them. Please, do leave a comment. Together let us explore questions, doubts, joys, and rejoice in identifying solutions. Let us BE voice for times when we have no sound of voice. Sue Bayliss