Cathy's ALS Journey
By Elizabeth Burke
Cathy’s official diagnosis came in mid-July 2014. In the months leading up
to her diagnosis she was bothered by muscle twitches during the overnight
hours that were more of a nuisance than anything else. She figured that it
was just stress. She also noticed a mild weakness in her right hand. Still,
it didn’t seem to cause great concern for her. What was on her mind,
though, was scheduling surgery for her right knee replacement. Because,
once that was taken care of and her physical therapy was completed, she
could get on with enjoying her early retirement that she worked so hard for.
Her physical therapy proved to be more challenging than it had been for
previous surgeries. She just didn’t seem to bounce back very well and was
unusually fatigued. While working out with her PT one day, he noticed that
her left leg appeared to be unusually weak. Shortly thereafter she
experienced a sudden fall that seemed to come out of nowhere.
Her doctor agreed to see her right away. Upon completion of his
examination, he told her that she must go directly to Brigham and Women’s
Hospital for a neurological consult and that he would call ahead. There she
had more tests and was eventually admitted. While waiting for the results
of her tests, Cathy began to Google her symptoms and she hoped that her
own diagnosis wasn’t true. Unfortunately, the next morning the neurologist
she had seen delivered the news that it was. In a cold fashion he told her
that she had ALS and shortly thereafter left her room. The only blessing on
this day was that her loving husband, Tony, was there with her when the
bad news was delivered. From the very start, they were a team.
Cathy made the valiant decision to make each day special in one way or
another. Her new doctor at Massachusetts General Hospital was kind, yet
honest. Soon, she was to learn that her disease progression was amongst
the fastest that he had seen in his practice. She learned that the trajectory
of each person’s ALS progression tends to remain the same throughout its
duration. That wasn’t the best news.
By the time September rolled around, Cathy, although still driving at the
time, realized that she needed help with everyday matters. Although I had
offered to take care of her when she informed me of her diagnosis in
August, neither of us could have predicted how soon that time would come.
Before long, Cathy could no longer drive safely, had to use a walker, wore
leg braces and used a scooter for longer walking trips. These changes
were difficult for Cathy and her family, but she always seemed to find the
strength and positive attitude to move forward. Undaunted, she and Tony
followed through with her pre-diagnosis plans to take their children, Jack
and Eve, to visit several colleges in the mid-west.
In October Tony and Cathy held a “Celebration of Life” party at the Spring
Valley Country Club in Sharon. It was a beautiful occasion. Friends, family
and colleagues from many different states gathered together to celebrate
Cathy and encourage her in her journey. What no one had anticipated
however, is that Cathy and Tony would re-affirm their marriage vows, in
celebration of their 21st anniversary. Cathy’s Dad, Fred, officiated. There
wasn't a dry eye in the place.
The following day, the Boston chapter of the ALS Association hosted the
Walk to Defeat ALS at Carson Beach in South Boston. Many of the
attendees from the previous evening’s party attended the walk and had
diligently worked hard over the last couple of months to raise money on
behalf of “Catherine’s Crew”. Her crew raised an an astonishing $53,445.
Cathy was asked to be the keynote speaker for the event. Although
Cathy’s ability to speak had begun to deteriorate, her message of love and
hope was received loud and clear. She touched so many people that day,
not unlike the countless lives that she had touched throughout her lifetime.
November brought with it so many challenges for Cathy, her family and her
caregivers. She now required electric chair lifts to navigate the stairs in her
house. Additionally, she had been experiencing more sudden falls that
happened even though diligent efforts were made in preventing them.
Despite her mental fortitude, her body was weakening at a frightening
pace, and her limbs were becoming increasingly paralyzed. This
realization hit her very hard, for Cathy had always been such a strong
person physically and an even tougher one mentally. Accordingly, her
innate toughness was demonstrated when she courageously traveled to
Colorado for a family vacation during the Thanksgiving holiday. She was
thrilled to get away and spend quality time with her family, including her
mother, Gretchen, who was to meet them there. Despite the fact that she
was unable to venture out from the hotel, Cathy knew that it simply was a
victory for her and her family in just getting there and in attending to her
Sadly, Cathy became dependent on her electric wheelchair by early
December. It was Christmastime and so many of her friends and family
stopped by to encourage her, help her, and just spend time with her. It truly
was a great testimony as to how very much-loved Cathy was.
Arrangements for visits were made and so many of her friends were
consistently dropping off meals for Cathy, Tony and Jack and Eve. The
outpouring of love and affection through the “Lotsahelpinghands” website
that we set up (and beyond) touched her so very deeply. Despite her
deteriorating condition, her wise counsel and keen interest in others’ lives
were front and center. Her body was failing her, but she was still Cathy on
the inside. Her legendary quick, dry wit and overall sense of humor
transcended her sufferings as well as the ever-present issues that
surrounded her own mortality.
I think that it’s fair to say that the quickness of Cathy’s disease progression
shocked all of us, including her medical team, of which there were many.
Since Cathy was loved by everyone, all of her caregivers and medical
teams went the extra distance for her. It takes a village to care for ALS
sufferers, particularly ones in the latter stages of the disease. Still, people
lined up to help. And when more professional caregivers were required at
home, well, they too, fell in love. And we, with them.
Witnessing the cruelty of this disease can bring someone to their knees. As
one of her primary caregivers, I frequently called upon God’s mercy to carry
me through this ordeal. And He did. I was beyond blessed as I witnessed
the “too many to mention” acts of perfect love. Amongst them was a
husband, her best friend, as he lovingly attended to her every need with
calm, strength and grace. He was the finest example of what a husband
should be. I told his mother and siblings who live in Chicago that. His
children were witnesses to it. I watched in awe as her father selflessly
cared for her basic, intimate needs without batting an eyelash; and I silently
wept when he read to her when she could no longer hold a book or Kindle,
or even turn a page. I witnessed an eighteen year old son, a senior in high
school, who was swiftly called upon to enter manhood while simultaneously
applying to ten colleges and competently attending to his younger sister’s
needs for transportation and care. I bursted with pride as I watched a
sixteen year old daughter model her new prom dress for her mom who lay
in a hospital bed, unable to move and barely able to speak. She
intentionally made this a happy occasion for her mother. She did not make
it about herself. She is truly her mother’s daughter.
But, there is one occasion in particular that rocked me to the core of my
being. It is the part of my faith where I know that serving others is the
greatest gift one can give another. Her brother, Mark, came to visit. He saw
that Cathy was experiencing great discomfort in her feet which were by
now, swollen and paralyzed. He washed her feet. He wrapped them in
warm towels. He massaged them. He smiled. He laughed. He told her
jokes. Her family was there and she was surrounded by love. I was so
blessed to be a part of that experience.
As time progressed her speech began to worsen and so did her ability to
swallow. Episodes of choking (usually on her own mucus) caused us all to
freeze and hold our breath, hoping that it would pass quickly. In mid to late
January, Cathy made the decision to have a feeding tube inserted into her
stomach that would, at the very least, greatly minimize her episodes of
choking while enabling her to receive basic nutritional needs. Well, it
worked, sort of. The choking was eliminated which was a God-send. But,
following this procedure, Cathy’s condition rapidly deteriorated. We were
unprepared for this.
During this time Cathy needed to rely upon her breathing assistance
machine - a BiPap - more frequently. Previously, she had only required this
machine during the overnight hours and occasionally, for an hour or two
during the daytime. And, although Cathy had previously recorded more
than an astonishing 1800 phrases (speech banking) which were to be
uploaded to an Augmentative Communication machine, and what would
have enabled her to communicate her needs, thoughts and desires with
relative ease, the insidious progressiveness of her disease prevented that.
Once she had received “hospice” designation, the likelihood of receiving a
speech augmentation device evaporated overnight. No longer able to
move an inch, she now could only communicate with her eyes and slight
nods of her head.
In what seemed to be an overnight development, Cathy was to return home
after a week of phenomenal care at Massachusetts General Hospital’s
Respiratory Acute Care Unit (RACU) to in-home hospice care. Cathy’s
disease progression was now in an “overdrive” state. While hospitalized,
Cathy had made a painful decision. She reversed her previous wishes to
have a tracheostomy to prolong her life. It was a very personal and
deliberate decision - one which was arrived upon like only a technical
analyst could do. Still, she had hoped to live long enough to see her son,
Jack, graduate from high school. At the very least, she had hoped to live
long enough to learn whether or not her first born would get into his first
college choice (his father’s alma mater - Notre Dame). As luck would have
it, of all of the ten college applications he made, Notre Dame would come
last. He would have to wait until the middle of April.
Now, if you knew Cathy you would know that she was a consummate
planner. She left few details to chance. So, it came as no surprise to her
nearest and dearest that within an hour of her passing on March 12th, a
miracle of sorts would occur … a planning miracle.
The phone rang at their residence. The caller ID said University of Notre
Dame. Tony almost didn’t answer it, thinking that it might be a solicitation
call. But he changed his mind. And the caller asked for Jack Takazawa.
The man on the phone identified himself to Jack. He was from the
admissions office at Notre Dame. He thanked Jack for an earlier twitter
response in which he defended the long-standing admissions policy of
notifying students by mail if they had been accepted. He then told him that
he didn’t ordinarily do something like this, but he just wanted to call him and
tell him that he had been accepted.
Tears of joy and laughter filled the house just then, substituting for the tears
of sorrow and loss. And everyone there thought the same thing: Cathy
had a hand in this! She went right to work while in heaven! !
Oh, and Jack should have been at school when that call came, right?
The following message was sent out to friends and family from Tony that
morning. Words could not have been more true.
"A bright light has gone out. In what seems to be the twinkling of an eye, a
force of nature has moved on. In the immortal words of Timon, “it’s a circle
of life kind of thing”.
Cathy was many things to all of us and for each of us it was different. And
that was her power (besides being obsessively organized); she made every
one feel like they were the most important person. The funny thing is that
Humor, sometimes biting, but always sharp. Empathy by the pound.
Listener, confidante, shoulder to cry on, co-conspirator, right wing
soulmate…the list goes on. Words fail us at this time but one is universal -
Cathy was “ours” and we were lucky to have her as part of the fabric of our
I am blessed to have shared her with all of you. And we are all blessed to
have known her for however long or short a time.
When we first decided that we would give “us” a shot (of course, we
discussed it and planned - would you expect any different?) I cited one of
my favorite quotes that we both thought applied to pretty much everything.
“He either fears his fate too much, or his desserts are small, who dares not
put it to the touch to win or lose it all”. Worked for us.
We will all continue on. A bit sadder for the loss but gladder for the
experience. Jack, Eve and I thank you all, our extended family, for your
support and love."
Keep Cathy's Bright Light Shining
Donate to CCALS today!
We hope to raise $100,000 in Cathy’s name for the CCALS Education and Retreat Center in Falmouth, MA.
Please join us in fulfilling Cathy's wish to help others as they live with this disease.