Healthy Living

Woman with Multiple Sclerosis Lives Her Dream

Woman with Multiple Sclerosis Lives Her Dream

Photo source: The Sunday Post

When a person is first diagnosed with a chronic, progressive condition like multiple sclerosis, it can be hard to look ahead to the rest of life and have a positive outlook. Moving forward in life and adapting to the change is that much more difficult with the knowledge that the condition will cause symptoms to worsen slowly over time, without an existing cure. It is only by hope that a person can continue on, though even still, it can be a challenge.

For Susie Twydell, a diagnosis of multiple sclerosis meant giving up on her lifelong dream of climbing Rwandan mountains to see silverback gorillas in their natural habitat. It also meant possibly giving up on her lifestyle at the time, one of regular travel and strenuous physical activity. The degenerative disease would slowly incapacitate her, limit her ability to be mobile, and present her with everyday difficulties that she would have to learn to navigate.

The trajectory of multiple sclerosis is unpredictable and varies from person to person. For Twydell, the disease progressed relatively quickly. She found herself limited in her mobility to a wheelchair within a six-month time frame. Knowing that the disease was only going to get worse and knowing that there was no cure available constantly threatened to discourage her and stop her from pursuing what she loved.

Today, Twydell has been to over 80 countries around the world and fulfilled her lifelong dream of seeing silverback gorillas in their natural habitat. Though the journey was not as she envisioned it earlier in her lifetime, it was nonetheless the single greatest experience of all of her storied travels. It would not have been possible had at any point she given in and allowed the disease to cut her travels short for good.

Diagnosed at age 29

Before Twydell was diagnosed, she was an avid traveler and adventurist. She had been to over 60 countries and taken up temporary residence in five. Her travels included almost every country in both South and North America, and this included one year of travelling and touring with a Latin American musician. On the other side of the globe, she climbed and reached Everest base camp in the Himalayan Mountains, which sits at an elevation of over 17,000 feet.

Being diagnosed with multiple sclerosis did not affect Twydell at first. Though her friends mourned for her and attempted to comfort her, she did not believe at first that it would significantly impact her quality of life. The reality of the difficulty of her situation was not yet present. She thought that she could continue to manage the symptoms that she was dealing with at that time for at least ten or twenty more years.

This is in part because Twydell was diagnosed with the most common form of multiple sclerosis, called Relapsing and Remitting Multiple Sclerosis (RRMS). This presentation of the disease comes and goes. Sometimes, the symptoms that individuals experience come for only a short while and completely go away after a period of time. Over the years, this general wear and tear affects the body like a slightly faster and more aggressive version of natural aging.

Though she would occasionally feel tired, and though symptoms flared up at times, Twydell was right in her assumption that she would be able to manage her symptoms at least for the first few years. Nothing changed noticeably, and though she did have some rough patches, she did not lose any mobility. For a time, she was able to continue on with her life as she saw fit. As with many who face unpredictable of autoimmune diseases, Twydell learned to both acknowledge the presence of the condition, without allowing it to occupy her mind too much.

Wheelchair-bound in six months

Things took a sudden turn for the worse after the first few years of successfully managing the light symptoms of RRMS. Within a six-month window, Twydell went from fully mobile to requiring a cane, to requiring a walker, to being limited to a wheelchair. She lost part of her vision and most of the ability to use her hands. Within six months, she went from relatively unaffected by the disease to disabled.

Figuring out how to cope with everyday life became a struggle, let alone continuing to pursue her passion for travelling. She was diagnosed with a secondary condition called neurological fatigue, which progressively limits her ability to function as the day progresses. She might be able to perform a task in the morning, which by the evening would no longer be possible. In addition to the fluctuating symptoms of multiple sclerosis, life simply became difficult.

In spite of her wheelchair, Twydell decided that she would find a way to persist in her travels. She began to opt into accessible travel destinations and learned how her body responded to changing environments. Everything from using the restroom to adjusting to the weather became a steep but surmountable challenge. Slowly, she began to find ways to cope with and eventually thrive in spite of her condition.

Silverbacks in Rwanda

Twydell firmly established for herself that she had not seen the last of adventure. She learned that a team of porters in Rwanda had been carrying wheelchair-bound individuals to a Rwandan wildlife park perched on the side of a mountain. On top of this mountain were some of the last of a species of gorillas that had captivated Twydell for years. The porters reopened the door to a chance to see wild mountain gorillas, of which there are estimated to be less than 1,000 remaining.

Immediately, Twydell began to sell furniture and clothes, fundraising as much as she possibly could to make the trip a reality. She and her husband successfully travelled to Rwanda, where Twydell was carried 45 minutes up the side of a mountain on a stretcher by the Rwandan porters. Atop the mountain, she was transferred to a wheelchair, and then something truly spectacular took place.

Just out of reach, a family of silverback gorillas approached Twydell, apparently interested in the wheelchair. One of the babies even came up to Twydell’s shoes and started playing with her laces. Twydell said that the experience “Was the No. 1 experience of my life.” This is coming from a woman who had at that point in time travelled to over 80 countries, some of them completely wheelchair-bound.

Finding community

Some lifelong dreams and passions depend on a person’s physical and mental health. Though we all know that in time we will grow old and become unable to pursue our goals, we are often unprepared to deal with the reality. This was certainly the case for Twydell, who now lives with her diagnosis and disabilities constantly reminding her of what she is unable to do. Rather than allow that to stop her from doing what she loves, she continues on in every way that she can.

Twydell found an online community of wheelchair users that post about travelling and being mobile in wheelchairs, and she is now a regular contributor. She says that being diagnosed with RRMS gave her the ability to “not necessarily to look on the bright side, but to find a bright side.” She stresses the importance of having a sense of humor in light of personal disability and frustrations, and the importance of prioritizing comfortability over pathfinding. Through this, she hopes to inspire others to never give up on what they love, no matter how steep the mountains or daily challenges before them.