The 2017 hurricane season left its mark. Powerful gusts and torrential rains wreaked havoc on cities and towns across the southern states. Homes were ripped from their foundations. Trees were uprooted. Families suffered enormous loss. Lives were changed forever.

As if life during Hurricane Harvey wasn’t hard enough on Bill and Renee Hassel, the fact that Bill is living with ALS adds a whole new layer to their story of storm preparedness and subsequent recovery.

Bill and Renee live in Victoria, TX. They are far enough inland and high enough above sea level to have successfully withstood a Category 1 hurricane in the past. When Harvey was expected to make landfall south of Victoria as a Category 1 or 2 storm, Bill and Renee made a decision to shelter in place. ALS has taken away Bill’s ability to walk and lift so Renee handled the necessary tasks: she boarded up windows and doors and stocked up on non-perishable foods, water, and medicine to last seven days if needed. They felt prepared.

The Hardest Decision

Things took a turn when they learned that Harvey was abruptly upgraded to a Category 3 storm. This was unprecedented for them. They weren’t sure if their safety measures would suffice now.

Should they leave? Should they stay put? Evacuation routes were like parking lots. They were likely to spend hours in their wheelchair van; what if Bill had a medical emergency on the highway? Their local shelter might have been a viable option, but it was not set up to adequately meet Bill’s specific ALS needs. They had to make the difficult decision and in the end, ALS forced them to stay in their home and prepare for the worst.

Renee got back to work in the short window of calm before Harvey made landfall. She set up their small 800-watt generator and butane camp stove, found extra batteries for flashlights and radios, recharged the batteries in Bill’s wheelchair and medical equipment, and filled the bath tub with water. Then they both said their prayers and went to bed.

Not Over ‘Till it’s Over

Within a few short hours, Category 3 force winds were literally shaking the house, and the endless bands of horizontal rain were mercilessly pounding the windows and doors. It went on for hours, but apart from losing power, thankfully, Bill and Renee’s home held out.

When the wind and rain died down, Renee started the generator, plugged in the fridge, turned on a lamp and recharged electronic devices. She prepared a hot meal on the camp stove and set up Bill’s feeding tube so he could receive supplemental protein and extra calories.

Unfortunately, things didn’t stay calm for long. Harvey made a return trip to Victoria and dumped several more feet of rain on the city before heading off to Houston.

With no electricity, Bill and Renee had to rely on their generator. “That little generator powered through for four straight days and nights,” said Bill. “During the day, it ran the refrigerator and charged batteries, medical equipment and phones. During the night, it powered my AVAP and Renee’s CPAP while we tried to sleep.”

They lost water too. When they had used up the water in the tub for flushing toilets, they set a tall kitchen trash can under the eaves to collect the roof rain, and used that instead. They had to wait to take showers; that routine was now considered more of a modern convenience.

Advice for People Living with ALS and Care Providers

Despite the endless challenges that Harvey presented, Bill maintains that in the grand scheme of things, he and his wife fared reasonably well. He believes that storm preparedness is key, and that includes having the right equipment in place. Having experienced Hurricane Harvey firsthand, he believes that the following tips are important to share with the ALS community:

Dial the Digits | Call 211 to let them know that you have specific medical needs, and that you wish to be placed on a priority list for visitation by emergency crews once it is safe for them to do so.

| Call 211 to let them know that you have specific medical needs, and that you wish to be placed on a priority list for visitation by emergency crews once it is safe for them to do so. Expedite Electricity | Contact your electric company to be placed on a priority list for restoration of electricity. The process involves a lot of paperwork and a doctor’s signature, but it is worth it if it means electricity will return more quickly.

| Contact your electric company to be placed on a priority list for restoration of electricity. The process involves a lot of paperwork and a doctor’s signature, but it is worth it if it means electricity will return more quickly. Shopping List | Purchase an inexpensive 2-cycle generator, 800 watt running / 900 watt surge, that runs on a gallon of gas and oil mix for about 12 hours, camp stove, window AC and small electric heater. Check them periodically to ensure they are working properly.

| Purchase an inexpensive 2-cycle generator, 800 watt running / 900 watt surge, that runs on a gallon of gas and oil mix for about 12 hours, camp stove, window AC and small electric heater. Check them periodically to ensure they are working properly. Safety First | Do not run the generator in the house or garage. Keep it outside under a porch and run an extension cord into the house.

Bill and Renee successfully weathered another storm, but it did not come without its challenges. Living with ALS amplifies those challenges; from the lack of physical strength to the reliance on electricity to stay alive; from no running water to the possibility of running out of food and medicine; and the fear of being even more trapped than you are already.

Living through an experience as harrowing as Hurricane Harvey involves strength, patience, and courage. Adding ALS to this equation throws an even bigger spotlight on our ALS heroes.