In the middle of the night in February 2009, Michael Black-Smith woke up and couldn’t feel the right side of his body.
“My arm and my leg were just numb and kind of dead,” said Black-Smith. “I actually called my parents before I called the ambulance since they’re doctors. They were really freaked out.”
Black-Smith said that after calling his parents and realizing that the feeling wasn’t normal, he called 911 and was rushed to the hospital.
“Because his speech was so slurred and he was having difficultly talking,” recalled his wife, Morgen Black-Smith, “he sent me a text that basically said, ‘I’m in the hospital. They think I’ve had a stroke.'”
This sudden on-set of paralysis was the first sign that Black-Smith had Multiple Sclerosis. He was 29 when he was diagnosed with the disease in July 2009, only one month after he and Morgen got married.
Multiple Sclerosis is a chronic, neurological disease that affects the central nervous system, particularly targeting the brain and spinal cord. It affects 2.3 million individuals worldwide and is most evident in 20 to 50-year-olds. Though the disease has been found to be more debilitating in men, women are two to three times more likely to be diagnosed. Even though it is considered a rare disease, MS can leave its patient with the inability to walk, think or see properly, as well as drastically reduce their energy level.
Fatigue, along with muscle weakness, numbness and vision problems, are among the most common, early symptoms of someone that has Multiple Sclerosis. Black-Smith said that the first year living with MS was the most difficult because he did not know about the specific treatments needed or where to turn to first.
“I think not knowing what the cure is, not knowing what the cause is has really made this disease difficult to predict,” said Melissa Bruno, the Director of Client Services at the MS Society’s Greater Delaware Valley Chapter.
She said there are currently 15,500 patients registered with the chapter, 2,600 of whom reside in Philadelphia.
Bruno explained that patients who are diagnosed with MS typically have lesions or scars that wear away at the myelin or the cushion that covers the brain and protects nerve cells. When the cells are damaged, communication between the brain and nerves is severed. Because these lesions can occur anywhere on the brain or spinal cord, it leaves the affects of MS and symptoms all that more different and unpredictable for each patient. For this, some patients have no external signs of the disease and appear completely healthy. But with patients like Black-Smith, the struggle takes place on the inside.
“The first year was pretty challenging, trying to find a treatment that worked for me,” Black-Smith said. “I was in and out of the hospital a number of times with each new exacerbation kind of coming to light.”
Black-Smith explained that he and Morgen have had to adjust to living with Multiple Sclerosis in more ways than they had anticipated. Along with becoming aware of support groups for MS, as well as making themselves familiar with the disease-modifying medications (of which there are 11 approved by the FDA) and information about the disease, they explained that their personal lives changed almost completely.
“[We] were totally unclear for quite awhile what the course of things would look like,” Morgen said. “It’s an illness that’s hard to predict and everyone’s course is totally different. A lot of people talk about living with the uncertainty and that was definitely part of our experience.”
Prior to being diagnosed, Black-Smith said that he was preparing to take the licensing exams needed to become an architect in Philadelphia. Due to the on-set of the disease, it took nearly five years to pass all the exams. Flare-ups in his peripheral vision prohibit him from seeing at times. Because of that, along with extreme fatigue, he no longer trusts himself to drive. He has become dependent upon Morgen and public transportation to get around on a daily basis.
At the Greater Delaware Valley Chapter, Bruno said that supporting MS families and individuals both financially and personally is their main goal. She said that the chapter offers support groups for a range of couples living with MS. They also provide financial assistance for transporting patients to and from medical appointments and help families apply for disability and connect them to organizations that assist families affected by MS.
“As [Black-Smith] progressed in his disease, we started our own support group through the local MS chapter for couples in particular because they didn’t have anything for what they call care partners,” Morgen Black-Smith said. “There were a lot of things that I was frustrated with and needed a space to talk to people who just got it on a very fundamental level.”
They currently hold monthly meetings at The American Pub in Center City, where couples can meet in a casual setting and talk about living with the disease. The Black-Smiths said that their initial idea was to find a location in South Philly, were they live, but they had to come up with another location due to the fact that there weren’t many handicap-accessible venues.
Bruno said that for people who have just recently been diagnosed, they are either grief-stricken or relieved to put a name to their symptoms. She said support groups are a great way to stay connected and get educated on the disease, whether you are someone who is diagnosed with MS, a loved one or a friend.
“Right away, the most important thing is that I would give patients the 1-800-FIGHT-MS number,” Bruno said. “MS definitely causes a lot of loss, causes a lot of grief which can put a lot of strain on a relationship. But it’s just being, I think, realistic about that, communicating, finding support when you need it and not being afraid to reach out. Communication is, I think, number one.”
-Text, photos and video by Addy Peterson.
Nice work, great insight!