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spinal muscular atrophy in canada: stats and impact on patients, caregivers and quality of life
spinal muscular atrophy (sma) is a rare genetic disease affecting less than 300 canadians per year.
what it feels like: 'i’m more' than just a person with spinal muscular atrophy
while the pain and other symptoms associated with sma keep nouma hammash down, her drive to give back to the community and take care of others never ceases.
aside from awareness and community support, nouma hammash makes one other simple request: that she and others with sma be seen for who they are, not their condition.
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nouma hammash was diagnosed with type 3a progressive spinal muscular atrophy (sma) shortly before her second birthday, and since then, she has been fighting against the disease to live a whole and happy life. currently bound to a powered wheelchair, nouma experiences severe chronic pain, fatigue, and muscle weakness every day—the type that sometimes even morphine can’t fix on its own.
“because of sma, i have really, really bad chronic pain,” nouma said when describing the physical symptoms she goes through. “chronic pain to a point where i need morphine and other drugs to allow me to live life.”
while the pain and other symptoms associated with sma keep nouma down, her drive to give back to the community and take care of others never ceases. currently, nouma works part-time as a services navigator with a background in social work and advocacy. prior to her current role, she also worked in translation and interpretation services.
living as a child with sma
nouma has no recollection of being diagnosed, being just an infant. but she does remember not being able to walk during childhood.
she recounts a story about how her parents would take her to school in a stroller and sit her at her desk, and that’s where she would stay while she learned from morning until the home bell rang. when it came to living a normal childhood, having sma made that out of the question.
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“(i was) very shy at school, refusing to go out on recess because it was very intimidating at that time,” nouma said.
sma also impacted nouma and her family shortly after she was born when her younger brother was born with the same condition.
“he was like my twin,” nouma said. “(he was) two years younger than me, and he was really my friend. so, i saw how it can progress badly.”
nouma’s younger brother ended up beating the life expectancy odds but sadly passed from complications of sma when he was only 22 years old. she recounts how grateful she is to her parents for taking care of her and her brother all their lives so that they could have the best life possible living with sma.
“i think my parents put a lot of effort in when i was very young, and when i saw how my dad was, i thought maybe my dad is a doctor,” she said, continuing, “my parents put a lot of effort into caring for us. they didn’t have community support, so they did huge, huge work.”
her parents and family also put a lot of emphasis on academics. because of where nouma is now, bilingual, with a master’s degree, and a lot of social work experience, she praises them yet again.
“my family put a lot of emphasis on education and now i thank them really for that because my degrees are what drive me now to live the life i’m living,” she said.
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coming to canada
when nouma was 34 years old, she decided it was time to start fresh somewhere new. she chose canada because the healthcare system would provide her with more opportunities to establish a level of independence that she couldn’t achieve where she grew up in the united arab emirates (uae).
“i was looking for more independence and a system that can support me if i need more support, and honestly, a place to call home,” she said.
she continued, “in the united arab emirates, if you are working, you have a work permit, you have insurance, you have status. if you are out of your job, you have nothing. go back to where you came from,” she said. “and syria, first of all, is not equipped really for a power chair. and now it’s been on fire since 2011. so, syria was out of the question.”
nouma was itching to find a place that allowed her to use her skills and talents while also providing the support she couldn’t get where she was originally from. unfortunately, because of her disability, coming to canada to give back to the community while also establishing a support system showed her just how unkind strangers could be.
“so many people have attacked me, saying ‘you came here for the drug,’” she said. “you go back to your country, blah, blah, blah. and that hurt because i came to canada before the drug. i came to canada because i have the skills, so it is very dehumanizing that people are seeing you only as some burden.”
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despite her experience with a few bad apples, nouma is “really proud to be here,” even telling others not to take it for granted.
“i literally cried on the citizenship ceremony day,” she said.
caregiving with a rare disease
now that nouma has established a life and career in canada, she finds that the available supports, while still lacking, are much better at giving her the freedom to live her life as she desires within her limitations. both her career and personal life are dedicated to helping others.
“i live with my mom and dad, who are both in their 70s,” she said, continuing, “they can help me throughout the day.”
“i take care of their specialty medical needs because they become a bit forgetful. i take care of all correspondence and bills. my mom and dad are not fluent in english, so they can speak it in conversation, but when it comes to paperwork (not so much). so, i am a caregiver also, which people don’t expect from a person in a wheelchair.”
she also acts as a caregiver in her professional life, but it’s not always easy to keep up with the demands of her life. she says that in canada, she’s lucky to have access to programs, such as funding to hire personal caregivers for herself.
“the government gives you money, and you hire your attendants. it’s a lovely program because it allows flexibility, which we people who receive services from the agencies almost never have,” she said.
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the flexibility to be free to make schedules for those who come to help her with day-to-day living helps nouma greatly, but with so many hours given to her, she has to pick and choose the type of help she needs most on any given day.
“i cannot exceed the amount of hours given to me. so, how am i going to use my hours today?” she said. “shall i ask her to cook, or should i ask her to help me with exercise?”
having to pick and choose the type of caregiving she requires on any given day leaves gaps in care that need to be filled.
from family to advocacy
nouma admits to not wanting children because of the heavy burden of her responsibilities on top of her disease and the fact that the “child needs all of your attention.” still, she is blessed to be a part of her second younger brother’s family.
“my niece is a huge part of my life, and she’s my motivation to stay healthy,” she said. “i want to be there for her, and she gratifies my motherhood instinct to an extent.”
while being able to be there for her niece is something that nouma is grateful for, doing so can come with heavy reminders that she’s living with sma, and it changes how she can interact with others.
“i used to hold my niece when she was months old and give her a bottle and let her sleep in my arms,” she said. “one time, she was crying and crying. and you know, you have to put them upright or put them on their tummy if they have colic pain. i couldn’t do any of that, so i handed her over to my mom, and that day, i cried so hard because i felt the injustice.”
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the injustice she felt is geared toward a drug that’s currently available but far too expensive and not covered under government insurance.
“giving me the drug doesn’t for sure guarantee that i’d be able to carry her, but at least we’ve done everything,” she said, explaining that the viable drug option could change everything for her and a lot of other people with sma if the government of ontario were on board with making it accessible. “you can see the disparity in several aspects of my life between what the body can do and what the mind can do, whether professionally or family life. this is not easy, not easy at all.”
in her professional life, nouma has first-hand experience with people who have spinal injuries and the effects that these conditions or injuries can have. even with her own health battle, she can’t help but go the extra mile for others.
“whenever i get a chance to advocate, i jump in,” she said. “i was so fortunate to win the advocacy award (at an event with muscular dystrophy canada). so, when they gave me the mic, i said, ‘i want to thank you because i don’t have the energy to create opportunities to do what is important to me, but you are creating the opportunities for us to do what’s meaningful for us and for the community.’”
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accepting her disease while asking for change
people living with sma often have high intelligence scores, and according to nouma, it may be because they spend their lives trying to overcompensate for what their bodies cannot do.
that said, nouma isn’t one to dwell on what her body is incapable of and works on the psychological aspect of the disease in ways that allow her to keep a positive attitude while working, taking care of her parents, and advocating for others like her.
“you do what you can and accept what you cannot change,” she said. “it’s easier said than done, but i try to actively and consciously work on that self-compassion. it’s important, and i just got to learn that recently in the last couple of years.”
to keep her mind healthy, nouma practices spiritual meditation, calling it her “me time.”
“it has been a lifesaver for me because i started this practice at a time when the pain was extremely bad, and i just wished i would die,” she said, later continuing, “i don’t know what happened. in a very subtle way, the anger started to subside.”
meeting others in the community has also been a saving grace for nouma, with her stating that “people who are like-minded, who can be another family as a support group, that practice has been crucial in my life.”
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she also practices daily gratitude, thinking of three things each day that she can be grateful for to keep her spirits up on both the easy and challenging days. it can be difficult, though, when facing the world with a disability because sometimes people can only see that: the disability.
“don’t look at the person only or the wheelchair only. we have skills and talents and responsibilities, but yes, our life is way harder than people who don’t have this condition,” she said.
“it’s not easy to find a job. it’s not easy to find an accessible unit that is kind of affordable to the amount of work you do. you have to advocate for everything.”
she asks people to be more aware of the adversities people with sma face on a daily basis and to say something if they see something.
“if you go to a restaurant and there is no door opener, call the manager. if you see the elevator in the subway not working, bring it to their attention. if you hear a campaign about accessible housing, maybe you can send a letter,” she said. “this is our life. it’s not easy. we need your support and trust me; we will give back to the community. we are already giving back.”
aside from awareness and community support, nouma makes one other simple request: that she and others with sma be seen for who they are, not their condition.
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“i’m myself. i’m a daughter. i’m a sister. i’m a social worker. occasionally, a translator interpreter. i’m a neighbour. i’m all of these. i’m not only the person who sits in one of these (wheelchair).”
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