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

basic needs. 

 

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

we were.

 

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

lives.

 

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. 

Thank you!