A Woman with Exemplary Strength

At first glance her beautiful smile, captivating eyes and photogenic dog grab attention. What’s likely missed is the wheelchair 25-year-old Bismarck, North Dakota resident Alissa is seated in.

And that’s just the way she likes it.

“Don’t judge. We all have challenges no matter what we look like. We can overcome them.”

People sometimes assume Alissa has mental challenges or is incapable of having a job because she’s in a wheelchair.

Both assumptions are wrong.

Alissa is many things.

Incapable is not one of them.

She’s a daughter, a sister to six siblings, including a twin brother; a 4-H alum, the 2016 Strasburg, ND High School valedictorian, a 2019 Northern State University (Aberdeen, South Dakota) Homecoming Queen, an aunt, accomplished cook and spouse to Nathan, whom she met in college.

She’s gainfully employed and will receive a Master’s Degree in Social Work (MSW) from Ohio State University’s online program in August 2023.

“I hope to be a case manager or counselor for others with barriers to be successful in their communities. I realize my life could be so much different. I’m fortunate not to have mental health issues. I want to be a resource for those with limitations.”

Diagnosis

Alissa was a 12-year-old sixth grader when a genetic test confirmed her diagnosis: Friedreich’s ataxia (FA).

FA is a rare inherited neuromuscular condition causing progressive damage to one’s nervous system and movement problems, eventually resulting in wheelchair use. FA can also affect the heart.

It does NOT affect cognitive abilities like thinking and reasoning.

Symptoms generally begin between ages 5 and 15 years of age, although sometimes they appear after age 25.

More information at: Friedreich Ataxia | National Institute of Neurological Disorders and Stroke (nih.gov)

Reaction

“I was scared when my parents and I heard this. I remember us all crying. We’d experienced my brother Nathan, who’s 10 years older, struggle as his identical disorder progressed. I didn’t want my parents to feel guilty for my diagnosis.”

Even today she can’t imagine being a parent and having to tell a child they have a life threatening disease and may never get better.

She attended physical therapy twice weekly to slow the progression.

Alissa’s disorder was monitored regularly and she was part of several medical trials at the University of Iowa.

Neuromuscular Multispecialty Clinic | University of Iowa Stead Family Children’s Hospital (uihc.org)

Isolation

As the FA progressed during her high school years, Alissa felt isolated in her rural North Dakota community. “I sensed I was the only one who was different.”

Changes happened at home and at school.

She could no longer help her family with outdoor chores. Instead, she became more responsible for household chores like cooking and cleaning. She had to stop showing animals in 4-H and eventually quit the club.

Nathan and Alissa were the only students with disabilities at school. To accommodate them, railings were placed in hallways for her to grab while walking. Stairs were converted into ramps and because the lunch room required walking stairs, Alissa’s meal was brought to her in a separate room, adding to the feeling of extreme isolation.

Alissa had an Individual Education Program (IEP) allowing her to take notes on her iPad and receive physical therapy every week. But she had to watch classmates during gym class because there were no adaptive options. Again, extremely isolating.

She was able to maintain her strength and walk until she went to college.

Independence

Alissa bucked family preferences by choosing NSU. “I wanted to attend college where I wasn’t known as another student’s twin or ‘that girl that can’t walk.’” Other selection criteria included being far enough away to discourage going home every weekend but close enough to be able to go there on long breaks.

In other words, Alissa wanted to start anew and be more independent by choosing her own friends and hobbies. She also had to become her own best advocate and became familiar with disability services there.

At this point Alissa had an electric chair helping her navigate campus. Her strength remained and she continued to exercise regularly. In class she was allowed to do all her notes and testing online with extra time since her dexterity slowed.

She was an active collegiate. 

As a member of the NSU Honors Program she presented her thesis, “Depression and Perfectionism in People with Friedreich’s Ataxia” at the National Honors Convention in New Orleans and was a peer mentor for the TRIO program, which provides additional support for college freshmen. “I found myself caring about helping students with barriers be successful.” She was twice voted the mentor who exemplified an ideal role model.

She graduated in 3 1/2 years.

Acceptance

Alissa admits accepting this diagnosis hasn’t always been easy. “I cry a lot.”

Initially when FA didn’t affect her much, she enjoyed the attention. “It gave me an excuse to not do something I didn’t want to do.”

Today she knows she’s going through stages of grief whenever she loses the ability to do something. “I get quite frustrated when I need help with simple things that used to be easy for me, like picking an item up off the floor, using the oven, or when I fall getting out of bed.”

Alissa doesn’t drive. Her reaction time is too slow. “It’s the most frustrating thing about my disability. Having to rely on other people sucks, no matter how much support you have.”

“Everyone always tells me I’m so positive. I tell them I try to be, but I have bad days too. There are days I feel sorry for myself or jealous of others. I wouldn’t be who I am today without my diagnosis, but I try not to let it define me. I try to find a way to do most things I enjoy. I have so much love and support from others. I want to use my diagnosis for good and know that God has a plan for me.”

Her favorite quotes inspire and motivate her to remain positive. “I see your pain, and it’s big. I also see your courage, and its bigger.” “Just because she carries it well doesn’t mean it’s not heavy.”

Today

She’s working full-time but lacks the energy to work out to maintain her strength. It’s her belief the disease has progressed at a quicker pace in the past few years.

In early 2023, the Food and Drug Administration (FDA) approved omaveloxolone (brand name Skyclarys)-the first treatment for Friedreich’s ataxia (FA).   FDA approves first treatment for Friedreich’s ataxia | FDA.

Alissa is eager to start taking the drug as soon as it’s available, again commuting to Iowa to see the nearest specialist. In the meantime, she continues to have her heart monitored regularly. “There isn’t much any doctor can do.”

Future

North Dakota winters can be difficult for Alissa. Ideally, she and her Washington native husband would like to live in either Arizona or Washington. She craves being outside in nature more often and deeply misses swimming, walking, hiking and biking.

Many women with FA have children and someday Alissa hopes she can experience being a mom too. However, she’s realistic about the challenges and responsibilities of caring for children, especially newborns.

There is a lot to consider regarding family planning. “I can’t be on medications that prevent this disease progression while I’m pregnant.” So, for now, she and Nathan are enjoying the aunt and uncle life.

Alissa envisions herself advocating for others because she knows how difficult it can be while appreciating how truly blessed her life has been with healthy mental health.

Wishes

As for what she wishes for other than a cure for this condition, Alissa keeps it practical: a day of shopping and getting her nails done and then adds, “I’d love to go on a vacation with my husband to Disney or on a cruise. Both of those destinations are accessible.”

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©June 2023 Linda Leier Thomason. All Rights Reserved.