When my friend, let’s call her Becky, was diagnosed with Multiple Sclerosis about 18 years ago no one knew what course it would take. That is one of the frightening things about this disease. The doctors can’t tell you what particular symptom to be ready for because to our understanding there is no road map to follow.
Becky first noticed numbness in her fingers which lasted several days and stopped. Next was the jaw drawing up on one side and the doctor diagnosed Bell’s palsy. The jaw returned to normal and then the knees went weak, first one and then the other. At first a therapist said Becky had a mobile knee cap but when the problem left one knee and went to the other and she lost bladder control while on a picnic one day he sent her on to the ER. Even then the diagnosis wasn’t clear. The medical team gathered round and discussed the problems and pretty much decided she had a tumor on her spine causing the problems. With that they decided to do an MRI. Becky was terrified with that ordeal but came through like a trooper. Waiting to know is always the hardest. By early the next morning the answer came and the brain scan showed she was dealing with Multiple Sclerosis.
She quickly went from unbalanced gait to walking with a cane. Then she would lose her balance while trying to stand with a walker. There were times when she couldn’t get up out of bed and that was treated with steroids. The magic steroids would surge through her body and up out of the bed she would come and even be able to walk pretty normal for a few days. Of course the steroids could not be continued because over all they would end up doing her more harm than good. After about a year of struggling to stay on her feet it was decided a wheelchair would be the safer equipment for her to use. So, Becky began her years of life in a wheelchair. She was but 26 when first diagnosed and now she is 42. The disease seemed to find its most prominent route for her and left Becky immobile from the waist down and has remained that way for several years.
She has experienced life in a wheelchair day in and day out for many years. At first she used a manual chair, then progressed to electric and did pretty well getting around except when shopping. The shopping experience is not easy when you are maneuvering in a wheelchair.
Trying to get into many stores is only the beginning of the problems. First comes trying to find a wheelchair space to park the van. It is a fact that many unthinking people park in these places for a quick shot at the store and leave those who really need the space making trips around the parking lot in search of a roomy place to park. You see the van spaces marked for those with disabilities are for vans. There is a reason for particular spaces marked for vans. Some of them have side doors that need to be opened and a lift pulled out to allow the wheelchair user to be lowered down while setting in the chair.
So many times Becky has found a wheelchair space only to come back out of the store and find a vehicle parked on the striped lines right beside her van. No way to get in the van then until the person who decided to block access to the side door and lift comes back and moves their vehicle. By the way, one of the worst things for a person with MS is heat. So many times Becky has come out of the store into summer heat to find no way into her van and then rather than wait she would have her driver back the van out into the lane of the parking lot so she could get into the cool air in the van.
While trying to stay out of the way in the parking lot she has found many rude drivers who don’t have a minute to wait while the van is moved for her so she can get in. Now we need to mention getting on into the store. Oh yes, they have complied with the law that tells them they must be wheelchair accessible but many are on the border of not accessible at all. The ramps are sometimes very narrow, far from the door, steep, cement broken and some leave little room for turning onto a narrow sidewalk.
Not all stores have nice buttons on the outside of the door to push for automatic opening. Not all people want to help the person in the chair. Some do help and are very nice but many are not. Now once in the door comes another adventure. Becky decides to visit the toy aisle to purchase something for her children.
Starting down one aisle she notices people shopping and to be polite she maneuvers to another only to find boxes of inventory waiting to be shelved. Another aisle has product placed in the middle with no room for passing in a wheelchair. After some time Becky finally makes it to the toy aisle.
Her field of vision is the bottom of the shelf to a little over waist high for those who walk. As she reaches for a product many times those who walk are in a hurry and reach in front of her to grab what they want. Some do say “excuse me” and others frown for the inconvenience of reaching.
Becky takes it all in stride but then as she makes her way to the check out some will walk in front of her causing her to stop her chair abruptly to keep from running into them. She does get somewhat frustrated with her shopping experience. When finally at the check out she finds the clerk in a hurry and agitated that it takes Becky a minute to get her money out to pay. Back to the parking lot and into the van and home. That little haven of rest where the world is shut out and it’s her, the kids and her husband.
The store is one struggle for the wheelchair user but there is another that would seem a surprise. Becky needs to visit her doctor and at times the ER or has a hospital stay. Beginning with the doctor Becky never has a real exam. The doctor’s offices are often small with not much room for turning the chair around. The exam table is out of the question because the office is not equipped with a lift or people to help Becky out of her chair to be checked like anyone else visiting the doctor.
The ER is no better. Becky is seen at the ER for serious urinary tract infections from time to time. It turns into an embarrassing situation for her there as a big commotion starts with the attendants trying to figure out how to get her into the bed. Becky has offered to bring her own lift to the hospital but that can’t be done because of insurance practices.
There are times she has tears in her eyes while setting quietly, trying to be a little dignified while the professionals decide how to handle the situation. After she is finally in the bed and the doctor has visited, the tests run, prescriptions written then when it’s time to go home it all starts again with getting her out of the bed and into the chair. Her wait is longer while they figure out again how to move her. It seems incredulous that this happens in our modern doctor’s offices and hospitals but it does.
Becky suffers from pressure wounds from her life in the wheelchair and needs a new reclining office chair and help relieve her body from the ravages of setting day in and day out. She is given big sales pitches from companies who promise her they will have a new chair in a matter of months. So far she is still waiting … two years later.
Just so Becky’s story doesn’t leave the reader too depressed you must know that she feels very blessed. She has been married for 12 years and is raising three children. She has an 8 year old and a set of 4 year old twins. There is family who cares for her and she is able to stay in her own home with personal care attendant services and home health.
Still life in a wheelchair is very confining especially when at one time she was very active. The thing Becky wants the most is to be treated like any other mother and wife. She doesn’t want to be talked down too and wants others to know that just because her body doesn’t work right they should not assume that her brain doesn’t either.
Becky is quite capable of hearing when others talk to her. No need to shout. She can read and write and do all the things ‘normal’ people can do just with a few limitations. Many people assume that a disabled person is just automatically mentally disabled and can’t hear besides!
If you take anything away from this article please do this. The next time you are shopping, visiting the doctor, parking your car or any other every day activity take a moment and think how you would do these things in a wheelchair. Perhaps it will change your view of the next wheelchair user you see.
Life in a wheelchair can be managed nicely but it is a difficult life to say the least. Thankfully Becky stays pretty much upbeat about her life with the one thing that bothers her most being those people who treat her as though she is less of a person because she is setting down. Best wishes to all those who are making a good life in a wheelchair. God bless you!