Taking the road past the unthinkable

Taking the road past the unthinkable
Pamela Telis and Harold McKeon in front of their Avondale home across the street from Boone Park South.

This is a love story.

After a life of being single, Pamela Telis found the love of her life in her mid-50s.

It is also a story about living, not dying.

A small group gathered in Boone Park on July 25 to take the ALS Ice Bucket Challenge for Harold McKeon.

A small group gathered in Boone Park on July 25 to take the ALS Ice Bucket Challenge for Harold McKeon.

Married five years, Telis received news two days before Christmas 2014 no one ever wants to hear: her husband, Harold McKeon, was diagnosed with ALS disease.

“We had planned a quiet Christmas and end of the year by ourselves so we had two weeks to ourselves, without any commitment, to process this,” said Telis. “It was a time of great grief, lots of tears, lots of fear, but we could begin the process of ‘what is this about?’”

The road to that diagnosis started earlier in the fall when Telis noticed her husband’s arm was twitching. “I said maybe it was just stress,” McKeon said, “but it went on for the longest time so I went to my doctor. He didn’t say anything, but Pamela said ‘This is bad.’”

Telis said it took several months of testing to diagnose amyotrophic lateral sclerosis (ALS) because doctors must first rule out many other diseases.

“That took about three months and as time went by we were coming to the realization…at different rates…that this could be ALS,” Telis said. “Then he started with stiffness in his right hand and now his voice is starting to change and that is scary, because it can progress kind of quickly.”

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Patients in the later stages of the disease may lose their voice and become totally paralyzed.

“Two thirds of people with ALS lose the ability to speak and so we’re now ‘banking his voice’ to use in a speech-generating device, if and when the time comes,” said Telis. “When something like this happens, you go online and read everything.”

A second medical opinion in January confirmed the diagnosis and now they could not deny the road ahead.

McKeon said, “It is what it is. We just have to make the best of it and try to keep a positive attitude and live life as much as you can. I want the rest of my life to be happy.”

Getting to the new normal

One piece of advice given by Patricia Stanco of The ALS Association Florida Chapter was, “The sooner you get to the new normal, the sooner you will focus on the living part of this disease and not on the dying part of the disease.”

Harold McKeon gasps in shock as friends dump icy water on him in support of his fight against ALS.

Harold McKeon gasps in shock as friends dump icy water on him in support of his fight against ALS.

The Avondale couple’s ‘new normal’ included retirement, travel and a lot of research.

“I am a take-action person and we got retired ASAP, bought an RV, bought a tow vehicle and planned a cross-country trip in two months and took off for eight weeks,” Telis said. “We have two more trips planned. In the fall we are going to New England because Harold’s not been to New England.”

Their first road trip would have been a good time to develop a bucket list, but they got so busy getting ready for the cross-country trip they didn’t have time to address it. “Then once we were on the trip we were so engaged we didn’t have any down time to think about it. I’ve been pushing him to get serious about it,” said Telis.

It’s not just McKeon’s bucket list they are addressing, though. “We want to go overseas because Pamela hasn’t been to Europe,” he said. Telis replied, “I do have to make my own (list) because these are my days to do things with my husband.”

Her days also include a lot of paperwork and research.

“Because I have been in the field of science, I go out and get data; I get information and I use it and synthesize it,” Telis explained. “I feel like it’s the next opportunity to do something to help Harold, for us to live as fully as we can for the time being.”

Now that they are back from their second road trip, their next big job is to bank McKeon’s voice, and learn about grants available for changing the house.

“How do we modify a historic home and still provide Harold for the needs he has?” Telis asked. “It’s important to Harold that I’ll be able to bring the house back.”

The gift of knowing

Telis and McKeon are still very much in love and look at his diagnosis as a blessing.

“We have the gift of knowing Harold’s life is at an end, and as hard as that is to say, it is a gift. We were able to modify our lives, change things, put things in place, begin the journey and love each other in a special way,” said Telis. “As hard as it is living with this feeling of ‘oh my God, my husband is going to die’ – and I say that to myself every day – I also think to myself ‘How lucky you are to be with him’ and now we’re together full time. I try to see the gratefulness of the moment.”

Although they have connected with a support group through the Chapter, the couple wants to be inspirational to others. Telis has agreed to provide her email address ([email protected]) in the event someone else dealing with ALS would like to connect with them. “It’s easier to understand a disease when you know someone,” she said.

Take the Ice Bucket Challenge

ALS, or amyotrophic lateral sclerosis, typically strikes people between the ages of 40 and 70. Avondale resident Harold McKeon, 60, joined the ranks of approximately 20,000 Americans who have been diagnosed with ALS, including well-known athletes, actors, musicians and politicians such as baseball players Lou Gehrig (after whom the disease is nicknamed) and Jim “Catfish” Hunter, actor David Niven, Senator Jacob Javits, musicians Lead Belly and Charles Mingus, and scientist Stephen Hawking, who has the rare, early-onset, slow-progressing form of ALS.

Originally begun last year to raise awareness, the ALS Ice Bucket Challenge quickly went viral and became the largest global social media phenomenon, and in the process raising $115 million for The ALS Association. Now, creator Pete Frates’ motto is, “This August…and every August until there is a cure.”

Although many view it as “suffer an icy cold shower or cough up the dough,” it’s really not an “either / or” type of challenge. For those averse to the idea or if living in a drought area, The ALS Association suggests filling your bucket with an alternate substance, such as spare buttons (or Skittles). Record the event, then while waiting for the video to go viral, make a donation at www.alsa.org/donatenow.

By Kate A. Hallock
Resident Community News

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