Posted by: The Sumaira Foundation in NMO, Patient.e, Proche-aidant.e, Voices of NMO
Her mother, dying on the bed next to her, asked Adelaide for a sip of water. As Adelaide moved to get up, the left side of her body felt numb. She managed to rise, but as she and her sisters went to lift their mother’s head, Adelaide dropped it back. What the heck was going on?
Perhaps it was the problem she had with the car transmission on the road to Connecticut where her mother lived. The stress and emergency movements of the vehicle may
have caused the neck pain she had noticed the night before. But she couldn’t shake the numbness and tingling. She waited for the symptoms to subside, but they only got worse. The next morning, Adelaide called her husband Joe back in Massachusetts, and without saying anything too clearly in order to not alarm him, her sisters, and her ailing mother, she asked him to come and pick her up.
Joe, of course, wanted to take Adelaide to the hospital, but she was adamant that because her mother only had a day or two left to live, she wanted to be available at all hours. To her, it was bad enough that she couldn’t stay in Connecticut to be with her. She resisted the hospital for two days, but finally, after increasing pain and consulting with her physician, she agreed to go to the emergency room for an MRI, where the service and its results could be provided immediately.
Well, almost immediately. Eight hours later, when finally in the MRI tunnel, Adelaide had a clear sense that her mother was gone. The doctor kept ordering more images, but hours later, when she was finally finished, Joe told her that her mother had passed the exact time that Adelaide felt it.
Transverse myelitis. There was a long lesion on her spine. She didn’t leave the hospital for two weeks. Pain medication and muscle relaxants were administered for the spasms, numbness and tingling, and to cool the flames burning her legs. Test followed test. And she began a course of intravenous steroids and plasmapheresis, which did their magic.
Her neurologist thought it may have been a thyroid problem. A tumor. A single incident. An unusual onset of Multiple Sclerosis at age 56.
A few weeks after her mother’s death, Adelaide’s son was getting married in New Hampshire. She was nervous about her health but committed to attending the celebration. She made it there, unhappy that as the mother of the groom, she wasn’t able to wear high heels, but happy to celebrate the occasion. Over the afternoon, exhaustion took over.
The exhaustion continued over days, and pain, numbness and burning all came raging back. This was no single incident. This was worse than the first time. Back in the hospital, Adelaide had new tests and additional treatments. Her neurologist finally had an answer. She had good and bad news. The good news was they had a diagnosis. The bad news was that it was Neuromyelitis Optica, NMO.
Adelaide got home five weeks later. Her symptoms had been stubborn this time, despite medications and physical therapy. She was put on a course of Rituximab and plasmapheresis, as well as ongoing pain medications. Slowly, over a year, her symptoms finally stabilized.
When she has someone to lean on, Adelaide can walk with a cane. When she’s alone, a walker is her obligatory companion. She lives in fear of another attack, but she carries on. The simple stuff of life takes more time and effort than she could ever have imagined – she, a healthy energetic go-getter who was always in motion, always the caretaker, always in action.
Adelaide used to wonder about the future. What will happen tomorrow, next week, next year? Today, she doesn’t look back or forward. She takes life one day at a time, and feels blessed that she is surrounded by a loving family and friends. In fact, Adelaide is still the glue that brings people together. She attributes much of her recovery and happiness to her husband Joe who has been her pillar of strength through thick and thin of NMO…
***
This man makes people smile. He did before and he does now.
At first, it didn’t occur to him that things could get as bad as they did. But he had an inkling. His wife Adelaide called him from her mother’s deathbed and asked him to take her home. It was so unlike her – she had traveled hours every weekend for 17 weeks to be by her mother’s side during her illness, so naturally, he was scared.
Neither of them had any idea why her body was both numb and in pain. It took him and her doctor days to convince Adelaide to go to the hospital; she was so adamant about being available for her mother. Joe says they were lucky, because it took the medical team only two months to diagnose Adelaide with NMO.
That’s Joe. Knowing that his life had changed forever, and knowing that Adelaide’s had changed even more, but also knowing that others have it worse.
Joe had been working for the same company for 33 years. When Adelaide got sick, he took every sick, personal, compassionate and vacation day he could to care for her. He says his company has been unbelievable.
It’s not only the company that’s been unbelievable – Joe and Adelaide are surrounded by a loving family and an immigrant community from the Azores that has wrapped itself around them. They call, they visit, and they help. Portuguese communities in three countries have held fundraisers to help with Adelaide’s medical costs and for research into treatments and a cure for NMO.
Joe refuses to crawl into a corner and stop living. Though their lives are more limited, he says, they cannot and will not lose their identities. For him, that means staying strong for his wife, keeping a smile on his face, and making others laugh. “If you lose yourself,” Joe declares, “you lose everything”.
… and still, Joe and Adelaide feel they have more than most.
Special thanks to Gabriela Romanow, Chief Community Relations Officer, for interviewing Adelaide & Joe and bringing their story to life. (This story was submitted in December 2016)
