When Maud was struck by her illness, she was working as a construction project manager in Region Värmland and was involved in several construction projects where accessibility issues came into focus. It was a good and fun job for Maud, but now she has been on sick leave for several years. The disease makes her weaker and she quickly becomes exhausted even by small efforts. The impact on her life has been enormous since the outbreak of the disease and it affects the whole family in different ways.
"During the pandemic, my daughter had to move away from home and fend for herself during her last year of high school," says Maud. "My medications meant that the vaccine had no effect on me. There was too much risk of infection at school and we didn't want her to live with the worry and guilt of infecting me."
Maud's husband worked from home throughout the pandemic, her daughter managed school brilliantly and the family avoided covid during the first years when covid was at its most aggressive. But even if they managed to avoid Covid, it was a difficult period when Maud's myositis deteriorated and at the same time she had to watch out for unnecessary contacts in the community.
"I didn't feel well, but at the same time it was important to be able to mourn what happened to me," says Maud. "But in the end, you have to find something that motivates and gives you a reason to get up in the morning, it's so easy to become sedentary indoors..."
The camera and nature came to Maud's rescue. When she turned 50, her husband and daughter gave her a camera and she started going on photo excursions. An Instagram account (@vernadotter) was started and suddenly she started interacting and getting exchanges from other people again.
"It was important to create a context and find something that makes you happy," she says. "Public health is important and nature is healing and that's why it's extra important for us with decrepit to get out!"
Maud went out into nature on easier trails with her Permobil X850 and a camera and started to come back to life.
"I never thought I'd see this again..."
The next big change for her came when Fritidsbanken in Karlstad brought in a pair of Zoom Uphill, all-terrain electric wheelchairs that can handle even tougher nature, for loan.
"At first, I tested the Zoom cautiously myself, but already the second time, I took a friend with MS on a trip out into nature," says Maud.
The friend was just as happy as Maud about the newfound freedom and about being able to get out into nature despite a few decimeters of unplowed loose snow and a weather that would have been impossible with a regular manual wheelchair. They drove the illuminated trails down to the lake and had a coffee.
"I thought I'd never get to experience the forest and the snow like this again!" exclaimed the friend during the coffee break.
A walk in the woods with coffee feels like a fairly ordinary weekend excursion that everyone can do, but for Maud it had previously been an impossibility. Thanks to Fritidsbanken, the doors opened to a nature that she had missed for so long.
"Before I got sick, I was very active in outdoor life, summer and winter. I have lived in the snow during mountain marches and have been a leader in the Swedish Outdoor Association. Sailing, skiing, lake and snow was what defined me," says Maud. "But wheelchairs and winter are tough. Since I got sick, I've mostly cursed over the snow that I loved so much in the past."
When Fritidsbanken in Karlstad got access to two Zooms for free lending for a few months, the irritation over the tough slush was replaced by happiness – finally loose snow!
"I feel life in my body in a way that I've really missed," Maud exclaims.
Now Maud hopes that Fritidsbanken in Karlstad chooses to bring in two Zooms permanently, after the first successful test period.
"I wish that municipalities around Sweden would decide to bring in two Zooms where there are Fritidsbanks so that you can go out together on equal terms," Maud hopes. "It's important to have another wheelchair user with you to share the experience with."
But unfortunately, Maud's hopes for equal opportunities for everyone to get out into nature are not always met. On one of her trips in nature, she came across a footbridge that was not wide enough. There was room in the structure for another plank, but for some reason it had not been put there. When contacting the municipality, Maud was referred to one of the municipality's accessible trails and was told that the footbridge was built for those who want to go out into tougher, untouched terrain.
"But I WANT to go out into rougher, untouched terrain," Maud exclaims. "Shouldn't I have it if I can, as long as the footbridge has another plank?"
In this case, it was not Maud's mobility impairment that was an obstacle, but a person's construction that had become a disability for Maud. The footbridge is an accessibility adaptation for pedestrians, and with an additional plank it would have been accessible for the disabled as well. It is difficult to accept that it is not nature, but human thought that puts a stop to and limits.
"I got links to areas that were adapted for accessibility, but my longing for tougher forests and nature did not die with the disease, it just gets bigger and more painful the longer that passes," says Maud. "And with the Zoom, I CAN get out where I want to go if there are no other limitations..."
This was an example of a limitation that Maud encountered, but as a whole, she is happy about the new opportunity she has been able to get through the all-terrain wheelchair.
To be treated like a cool girl
Getting out into environments without feeling restricted is also important for mental health.
"My mental health is improving. Just because I need a wheelchair nowadays doesn't mean that my longing for nature has disappeared," says Maud. "On the contrary, I am painfully reminded of the loss when I see and hear about the expeditions of my walking friends. The real nature is missing in my life."
"Nature is the best medicine!" she continues enthusiastically. "Those of us who use wheelchairs have all experienced limitations in an incredible number of ways. The zoom removes many obstacles and allows us to experience the healing nature on more equal terms as pedestrians."
Maud also often feels that people don't know how to behave when she arrives in her regular wheelchair.
"People don't know where to look or give a distressing look when you arrive with a wheelchair or electric wheelchair," says Maud. "People in Sweden often have a strange attitude towards those who are in wheelchairs."
When Maud took her rides with the Zoom, she didn't feel that way. Instead of being met with evasive glances, she was stopped for being so cool.
"I, a 52-year-old lady with a decrepit, have been stopped by 25-year-old guys who think it looks super cool and have asked where you can buy it," says Maud. "It's a bit different from when I meet people in my regular, larger wheelchair. Then people turn their eyes away, or worse, give me that creepy, pitying look that's so unpleasant. Oh my god, I'm just having a hard time walking! When I arrive with the Zoom, people turn around and cheer with a smile instead! It feels better."
She also feels that society today does not do what it can, even within the limits of reason, to make it easier for people with disabilities.
"Sweden has signed the UN Convention for Persons with Disabilities... And almost everyone will have some form of disability if they live and grow old...", Maud thinks aloud. "Then we must also have the ability to take this into account and adapt accordingly."
Maud pours on arguments as to why you have to make nature accessible to everyone and there is no doubt that she experiences a big, positive change in her life when she had a greater opportunity to get out into more challenging nature. And there is no doubt that she is passionate about being able to challenge herself again with new adventures, after the tough excursion she made to Hindens rev in the spring.
A teenage dream suddenly becomes a reality – "I did it!"
As a teenager, Maud often sailed with her family on Lake Vänern. The family went down to the southern part of the lake and sometimes passed the long isthmus Hindens rev that extends about 5 km out just outside Lidköping. The image of the reef from the sea awoke a thought and dream of one day being able to walk out into Lake Vänern on the narrow strip of land. Maud has always thought that "you can do it later" and took the opportunity for granted, until the disease hit her.
With the chance to borrow a Zoom, things came to a head and Maud, cheered on by her husband Magnus, made sure to give it a try.
"My husband is very action-oriented and he made sure to fix a trailer so we could get to Hindens Rev with the Zoom from Fritidsbanken," says Maud.
It was a tough expedition, but with a little help it worked out splendidly.
"I had to step out of the Zoom a few times and on a few occasions it took help to get the Zoom over narrow, rocky and steep passages, but it worked!" recalls Maud. "I tested the Zoom quite hard there on Hinden's reef, but it's very robust and can handle a lot."
Tears of happiness rolled down Maud's cheeks as she arrived.
"I did it! me, I did it!" exclaims Maud, grateful to have been able to create new memories without limitations.
For Maud, the story doesn't stop at having fulfilled one of her dreams. New dreams are born and Maud wants to try other adventures. Push the boundaries and reclaim the old life.
"I want to remove the limitations that came upon me," Maud says. "With the disease, I became more and more passive, but thanks to the opportunity through the Leisure Bank, I realized that it was not over at all. It's time to take back life!"