Support Marie’s Journey with Chronic Illnesses

Emily Brassell is organizing this fundraiser on behalf of Marie Rougie.

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[Les parents de Marie ont écrit une version en français. Pour y accéder, cliquez sur la 1e mise à jour (= « Updates ») à la fin du message en anglais. Alternativement, cliquez sur « see older updates » à la fin de la dernière « update »]

Note: you can see pictures of Marie’s adventures and others at the end of this message.

Imagine being a biologist who loves her job and an avid rock climber who thrives on a vertical wall. Now imagine losing all this to chronic illnesses – being unable to work at all, hanging on to your last bit of independence while your body is giving up on you for no clear reason. Imagine being unable to plan your life for the next month, the next week, the next day, the next hour – not knowing for sure when you’ll be able to wash your hair, do the dishes, or drive your car because you cannot rely on having enough energy ten minutes from now.

This is what happened to Marie.

She now has the opportunity for a surgery to improve her quality of life and help her heal, and I hope you can help.

When I met Marie at the climbing gym, she was an elegant, analytical climber who helped me see the most graceful paths up challenging routes. Her cheerfulness, kindness, and good humor quickly made her a good friend.

After many years of unexplained medical issues, Marie was diagnosed with Multiple Sclerosis (MS) in 2016. The same year, her first major relapse with MS led to 3 full months of medical leave followed by a long partial recovery. She eventually managed to return to full-time work and to rock climbing – amazingly she won 3rd place at the Dixie Rock Climbing Competition just a year later!

In 2020, after a year of sporadic worsening, Marie’s health and mobility deteriorated drastically with a major MS relapse. She now needed a wheelchair, a stairlift, hand controls for her car, and other adaptive accommodations.

Marie struggled to return to work and her pre-MS life for the next year. The standard immunosuppressive MS treatments stopped helping, and were actually making her feel worse. Gradually she realized that recovering from this MS relapse would require identifying and treating other health problems, and she accepted that healing might take a very long time. In 2021, Marie was diagnosed with Chronic Fatigue Syndrome (CFS). CFS is characterized by unpredictable, debilitating physical and cognitive fatigue – which Marie suffers in addition to the fatigue and symptoms caused by MS.

To make matters worse, Marie has battled an eating disorder called ARFID (Avoidant/Restrictive Food Intake Disorder) throughout her life. This little-known disorder makes eating difficult due to sensory overload (certain textures, tastes, and smells are unbearable), lack of appetite, and an unexplained disinterest in food. For Marie, it’s led to poor nourishment and a complicated relationship with food.

In 2021, Marie made the heartbreaking decision to stop working and go on short-term disability leave to focus on her health. She was extremely proactive, dedicating hours to researching her conditions and possible treatments. She also built a strong healthcare team composed of nutritionists, neurologist, psychologist, primary care doctor, functional doctor, health coach, physical therapists, acupuncturist, eating disorder doctor, neuropsychologist, gastroenterologist.

Marie and her healthcare team began trying various treatments, but each one required more physical strength than Marie’s ravaged body could support. She was caught in a vicious cycle of attempting a new treatment, experiencing debilitating fatigue, and then failing to feed herself. With her weight plummeting, her exhausted body simply could not handle these desperate attempts at recovery.

Marie lives alone, without a caregiver, and she needs a way to feed herself even when her symptoms are at their worst. Her healthcare team suggested the insertion of a feeding tube as a supplemental feeding source. Marie plans to use this feeding tube to rebuild her strength so that her body can withstand the treatments she needs. She’s very excited about gaining weight and improving her nutrition! The surgery is scheduled for April 21st 2022.

If you know Marie, you know she’s a fighter! I’m amazed at how hard she’s working to improve her health – and even more so at how upbeat (even joyful!) she remains. She’s the same fun and loving person she’s always been, even when her climber’s body is stuck in a wheelchair. She’s come so far on her own, but through her hardships she’s learned that it truly takes a village to live with chronic illnesses. Although she’s reluctant to ask, Marie needs financial support for her upcoming surgery due to accumulated healthcare expenses and her current low income.

The estimated cost of surgery is $2,000 - $4,000 out-of-pocket, after healthcare coverage. We hope to raise $2,000 to cover the surgery. Any leftover funds or additional support would be used strictly for medical expenses (doctor visits, medications, treatments, and medical supplies).

Marie could use all kinds of support! If you prefer to help another way, please contact Marie directly to learn about her needs (for example, help with transportation to different appointments, groceries, etc. during weekdays is always needed and appreciated!).

We will keep you updated on Marie’s health and progress. We hope that this surgery will put her on the road to recovery so that she can work and live fully in the world again. Stay tuned, and thank you so much for your friendship and support! : )

Marie in the middle of a golden field in Kansas during a cross-country road trip in 2012.

[Marie au milieu d’un champ doré dans le Kansas lors d’un voyage en voiture à travers les Etat-Unis en 2012]

Marie at the top of Avalanche Peak in Yellowstone national park, WY in 2012 during the same road trip.

[Marie sur les hauteurs du mont Avalanche dans le parc national de Yellowstone, Wyoming, en 2012 pendant le même voyage]

Marie at the top of Table mountain in the Grand Tetons national park, WY with a view of the Grand Tetons in 2012 during that same road trip. It was one of the hardest hikes she ever did.

[Marie en haut de la montagne Table dans le parc national des Grand Tetons, Wyoming, avec vue sur le Grand Tetons, en 2012 lors de ce même voyage. C'était l’une des randonnées les plus difficile qu’elle n’est jamais faite]

Marie on the rock. 1st year of rock climbing in 2013. At Pilot Mountain, NC.
[Marie sur la roche. 1e année d'escalade en 2013. À Pilot Mountain, Caroline du Nord]

Climbing crew at Pilot Mountain, NC. From left to right: Geoff, Marie, Bennett, Michelle, Anthony. Emily (me) taking the picture

[Équipe d’escalade à Pilot Mountain, Caroline du Nord. De gauche à droite: Geoff, Marie, Bennett, Michelle, Anthony. Emily prenait cette photo]

Marie at the top of a climb at Pilot Mountain, NC in 2013.

[Marie en haut de voie d’escalade à Pilot Mountain, Caroline du Nord, en 2013]

Marie at the top of month Sherman, CO in 2015. Highest mountain she ever hiked. Coming down was one of the toughest things she ever did.

[Marie en haut du mont Sherman, Colorado en 2015. La plus haute montagne qu’elle a randonnée. En descendre était l’une des choses les plus difficiles qu’elle est faite]