MS & Independence
The theme for World MS Day 2016 was Independence and it resonates with me not just because of my own multiple sclerosis but because of other recent experiences. Merriam Webster's dictionary lists 'Independence: freedom from outside control or support; the state of being independent.' One of my greatest concerns of having MS is that someday I might be dependent on others for my basic care and much more, but I have come to realize that independence isn’t just a concern for people affected by a chronic disease but rather it affects us all and we gain independence or lose it, in many different ways.
Independence, but with Assistance
We might not appreciate our independence until it is lost and I don’t ever want to take for granted the people and things that allow me to remain independent. I’ve recently had foot surgery, making it a challenge to tackle the everyday chores of my home, especially anything that involves climbing steps or walking much more than a very short distance. Repeatedly I am the beneficiary of the efforts of others doing the things needed to allow me to be in my own home and heal over a period of six weeks or so. I would like to think I am doing this recuperation on my own but the truth is the additional help I am getting is allowing me to heal and work to regain my independence. While most of us would like to think we are independent, the reality is we are in this together.
In the progress of personality, first comes a declaration of independence, then a recognition of interdependence. - Henry Van Dyke
Devices for independence
Being behind the wheel of my car and getting to go where I want is another way that I can take care of myself, and that sense of independence always feels good. Two weeks post-surgery I met a friend for lunch – fortunately for me it was my left foot that was operated on and I can still drive my car with my right foot. We had a leisurely lunch, lots of catching up to do, and afterwards I stopped at the grocery store to get just a few items for my evening meal. As I struggled with my cane to get into the store it occurred to me that this was not going well and once inside I happily claimed one of the electric carts to get me around. This was my first grocery shopping excursion viewed from this low seated level, and I couldn’t help but think that for many of my friends, this is their daily view of life from their wheelchairs. This device gave me the independence to shop on my own and I know the assorted mobility devices of canes, walkers, scooters and wheelchairs do the same for so many others. We might not like them, but they are often necessary if we are to continue maintaining our independence.
I don't come with the wheelchair. The wheelchair comes with me. - Max DePree
Money and Independence
Of all the ways independence can be stripped away, I would put financial independence at the top the list. I can’t begin to say enough about the safety net of financial independence and how so many people affected by multiple sclerosis don’t have financial security and how they struggle daily with the cost of living with MS.
Money isn't the most important thing in life, but it's reasonably close to oxygen on the "gotta have it" scale. - Zig Ziglar
Recently I went onto long term disability thanks to my MS, and I stopped working full-time. My earnings have been cut significantly and if it weren’t for the fact we are a two income home with my husband still working, this reduction in income could seriously impact my daily life and my medical care. Living with a chronic disease like MS can require care that costs a lot of money. Paying for housing, food and transportation also takes money. In 2015, the average recipient received $1,165 per month for Social Security Disability Insurance (SSDI). Imagine how hard it must be to live on $13,980 a year if you are the only income source in your home. For the many people with MS living solely on income from SSDI or other forms of disability insurance pay, the prospect of financial independence is bleak.
Inflation hasn't ruined everything. A dime can still be used as a screwdriver. - Quoted in P.S. I Love You, compiled by H. Jackson Brown, Jr.
World MS Day 2016 challenged us to show how the fierce independence of people in the MS community can be an example and inspiration for others. Many of us have a network of people and resources, allowing us to maintain what we think of as independence, or something that closely resembles that state.
By ourselves we suffer serious limitations. Together we can be something wonderful. – Max Depree
But who are we kidding? We’re not in this alone – we are all there together working for the same goal of staying ahead of this disease. Only when the cure for MS is found will there be true independence.
Wishing you well,
How many specialists did you see before finding "The One"?