This post first appeared in Ms & Me on May 12th 2016
This week Declan Groeger challenges perceptions and examines our idea of independence. Desire to be free is a driving force for innovation and personal revolution.
I was diagnosed with Multiple Sclerosis (MS) in 1988and as the years have passed, my understanding of independence has changed.The most critical ingredient in the independence recipe is knowledge. I live my independence by making my own decisions. I don’t present my decisions as a fait accompli; there is always a discussion with other stakeholders in my life but the ultimate decision is mine and mine alone. Knowledge is power. There are two areas in my MS life where independence is crucial; treatment and Assistive Technology
Knowledge is power and we can empower ourselves by getting well informed. I must admit to not being fully informed in my earlier years on medication; this was partly due to the scarcity of information at the time but in particular due to my unwavering trust in the medical professionals. I didn’t address whether to go with medication or diet route until 10 years after my original diagnosis and then it was only after a 2nd opinion confirmed I had MS. There is such a mountain of information available that it canbe difficult to separate the reliable from the unreliable. Social media plays an enormous role now as people from around the world can compare and contrast treatment options and discuss side effects in real time. The importance of a good medical team cannot be overestimated- your neurologist, MS nurse and GP all at the coalface with you. Pharmaceutical companies are different, as their prime motivation is to keep shareholders happy with large dividends and any of their claims should be treated with a healthy dose of scepticism. It is only by reading, learning, analysing and discerning that with full knowledge we can make informed decisions, maintain our independence.
The need for independence is often misunderstood and mistaken for stubbornness, I know that personally.Weakness in my legs was one of the earlier visible signs.At that time in my life I did not want to ‘link arms’ with the person I was walking with; I wanted to be me, to walk independently without assistance. I thought that people would look at me pityingly if I used a cane or other walking aid. Vanity? I now know that people looked at me as if I was drunk stumbling around the street and using walls for support. They couldn’t see my invisible illness but if I had a stick, people may haveunderstood.Not using a stick was an example of my stubbornness; once I accepted myneed and started using a stick, I became more independent in that I could actually walk without holding the walls! I’m not sure how many times suggestions were made but my family and friends accepted that any such decision had to be mine.
When my wife Jean and I went to Italy to celebrate our 25th wedding anniversary, my need for further AT became very apparent on the cobbled streets of Rome. I rented a wheelchair there and myacceptance of myneed actually increased my independence. I had always thought that using AT was a sign of weakness, of frailty, but I wasso very wrong. Recognising the need of support shows self-awareness and strength; it is my recognition that I need supportthat has ensuredmy independence.Assistive Technology can bea liberator when accepted by the user.
The point of these anecdotes is that I made the final decisions on whether I use AT. I would have benefited from AT an awful lot earlier on my MS roadway but mentally I was not ready. But when I was ready, and once I reached that point, I embraced it wholeheartedly. If you’re a partner/wife/husband/friend of someone with MS, don’t just go out and buy a cane because you think they need it. Talk withthemfirst.
I will decide when I am ready for my next piece of Assistive Technology. I am not ungrateful for your thoughts and kind acts and help but offer and help on my terms; this may be the only true independence I have left. I have maintained my independence over the years to such an extent that sometimes I fear I have alienated some of the good people who have tried to help me at different times. Family and friends have seen me labouring under my MS load and I obstinately refused offers of help. I am much more polite in refusing help now; I also accept help more often than I used to. Independence is worth fighting for and let me put the world on notice that I will continue fighting.
Why do I valueindependence so much? Because I am human, because I am alive and being free is at the core of being human. There is also a bit of doubt- Idon’t want to become a burden on my loved ones, my family and friends. Most fundamentally, I don’t want to place a stumbling block in my own path.
Tell me, what does independence mean to you?
Here is a great blog by Mitch Sturgeon on Assistive Technology which may resonate with you as it clicked with me.