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MGA News

Spring 2003

Life With Gravis - Awareness II

M Gravis

To me one of the most helpful aspects of my early membership of the MGA was the support that I received from my local Branch. Since then Mrs Gravis and I have had the pleasure of visiting a number of Branches and without exception they have not been, as many imagine, a collection of ‘moaning suffers’ swapping the gory details of their Symptoms. They have been a clearinghouse of ideas on how to live with MG, exchanging valuable information on a whole range of MG related topics. Recently one comment, overheard on a guest visit to a Branch, worried me. The words “I resent being called a Myasthenic”, drifted across the room. Unfortunately I didn’t hear the reason for this, but it made me think.

When in November 1997, I penned (or perhaps more accurately word-processed) my first ‘Life with Gravis’, I began by saying “Hello, my name is ‘Gravis’ and yes, I am a Myasthenic”. In declaring that I was a Myasthenic I was not trying to convey that I was anything out of the ordinary or inferior, although Mrs Gravis would dispute that, and not with MG in mind. I used ‘Myasthenic’ as a statement of my condition, not as defining who or what I am. I do not see Myasthenia Gravis as something to be ashamed of; I didn’t develop the condition as the result of some unspeakable practice. I just happen to be someone who has MG. To me it is just a fact of life, and something that I, and also very importantly Mrs Gravis, have to live round. The one thing I do object to is being described as a ‘Sufferer’, to me that is very negative and really does put me in the role of victim. I have the condition and it causes me problems, but I refuse to ‘suffer’. When I talk to the doctor I ‘experience’ symptoms not ‘suffer’ them. To be fair to doctors they, of course, refer to patients ‘presenting’ symptoms, but that’s too much like handing out the prizes at a school speech day for me.

We live in a small rural community where I know and am known by most of those who live in the three villages that make up that community. I have always been quite open about my MG, without boring the pants off people, Mrs Gravis sees to that. I don’t want people saying of me, “I fear he ‘enjoys’ bad health”. As a result there is quite a high degree of MG awareness in the three villages. This, as well as promoting awareness, also works to my advantage. If I am ever in trouble, most people know how to help me. No one visits me if they have a bug, and they respect my afternoon siesta. Without the latter, Mrs Gravis assures me I can be very like a bear with a sore ear.

One of the activities that Mrs Gravis does allows me, is to chair the committee that produces our community magazine. She is also on that committee and can therefore keep an eye on me. Most of the work can be done from home, but I do have to chair the AGM, the 2003 meeting took place last week. Currently, despite the best efforts of modern medicine, MG still has my tongue. I am told that I don’t so much sound drunk, but more as if the dentist has given me a local anaesthetic. What to do? I consulted our Hon. Sec. and we decided that I should take the chair and that she would read my report for me. The appropriate Officers would answer questions and I could cope with the rest. As part of my welcome at the beginning, I reminded the meeting that I had MG and asked their indulgence. By keeping my comments brief I succeeded in completing the meeting without losing anyone, even being re-elected Chairman, although Mrs Gravis says that that’s because no one else wants the job. The meeting was over in record time, I suspect due to the Chairman being unable to babble on. During my closing remarks I pointed to a pile of MG information leaflets on the table and invited anyone whose curiosity had been roused to take one. The pile shrank rapidly and, hopefully, even more of my friends are now MG aware.

I am afraid that MG awareness is a bit of a hobbyhorse, and I can hear Mrs Gravis, she who must be obeyed, saying, “dismount at once!” so I had better do that right now.

MGA NEWS Spring 2003
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