Learning To Share What Is Happening

I was diagnosed with MS in 1985 after experiencing trouble with my vision.  Unlike many, I was diagnosed very quickly.  I saw an Ophthalmologist who immediately recognized that the Optic Neuritis was most likely caused by MS.  He recommended a Neurologist that I was able to see just a few days later. After talking with the Neurologist about different symptoms I’d had over the years, he too suspected MS and sent me to have my first, of what would be many many, MRI’s.  The MRI confirmed all the suspicions and I was hospitalized the next day and started to receive treatment.

MS has changed my life in many ways that have been both good and bad. The lessons that it has taught me are invaluable. The triumphs have been overwhelming. The struggles have and continue to be frustrating and at times devastating and frightening. The uncertainty of it is maddening if I allow myself to dwell on it. The future is something I have learned not to “worry about”, yet at the same time it is almost impossible not to. Though my prognosis, as much as there can be one, is one that lends itself towards maintaining an even keel of sorts, the reality of it all is that this can change at any time.  It has certainly done that over the last 31 years.

I have been fortunate in so many different ways.  My quick diagnosis, my overcoming many hurdles and my ability to maintain a positive attitude are all things that I am thankful for. My being referred to the neurologist that I was, has also helped me in many aspects over the years. I have seen many doctors and specialists throughout my life and he is one of those rare “one of a kind” doctors. He had become not just my doctor over the years but a friend as well which is so important during the hard times. I say had, because he has since retired 😦

I feel that it is because of the absolute mind boggling uncertainty of MS, that friends, people I work with and acquaintances, have some understanding and knowledge of not only the disease but what it is that I have been through and live with every moment of every day. It is of the utmost importance to me. Having people to talk to or lean on at times is something that is a huge part of my being able to deal with the disease itself. Unfortunately this has not always been the case and this has been my fault.

In the beginning it wasn’t something that I really shared with anyone.  I didn’t hide it or not tell people that I had, but it wasn’t something I really allowed people to be a part of. It wasn’t something I wanted them to be a part of. There are different reasons for this. I don’t feel that I truly accepted it until 1987 (I was diagnosed in 1985). Up until that time the things that happened were not all that serious. Once it became serious, I didn’t know how nor was I able to let people in. I know now that it was a huge mistake. I shut people out for way too long. I dealt with it but I did so on my own. I kept it all inside where it would at times eat me up. This I learned was not dealing with it nor was it very healthy

It’s not so much that I didn’t want someone to share it with I simply did not know how to do that. Obviously I was struggling physically, emotionally and mentally myself. I have always been a strong, independent person. When this happened I didn’t realize that I needed people. I only saw that it upset them to see me. I only felt pity from them. Was this the wrong reaction? I knew that wasn’t what I wanted and to be honest, I don’t know if that is what they felt for me. It could have simply been their caring about me that I saw, yet didn’t see.

There was so much going on with my body, mind and heart at the times that even I didn’t fully understand it. It is now, so many years later, that I have thankfully realized that I need to share these things. Unfortunately at that time I just didn’t know how! The only thing I can do now is try. The other unfortunate thing is just that, how do I or anyone else in a similar situation, do that? It is extremely difficult to explain and convey all that I was feeling at some very dark times through the years. Just the physicality of it is something that I have found in trying to write these pages, and the times I have tried to explain it to people, is almost impossible to do. Unless someone has been through a similar situation in their lives such as a stroke, because yes, symptoms can be very similar.  When dealing with the brain, things get very, very complicated!

I think of all of the people in the world who suffer every day, of the hundreds of terrible diseases there are, and I say to myself: “Rae, you are one lucky person. What makes you think you are any different than anyone else? Who do you think you are?” The answer? I am lucky. And I am no different than anyone else nor am I special or unique. I’m simply one of many in the world who have “life” to deal with. There are millions of people in the world who have gone through things much more terrible than I. Things that I can’t even begin to imagine. There are millions who will continue to suffer much more than I on a daily basis.

What I hope I can do, is teach and/or help at least one person. Why did I get MS? maybe that is the reason?  Maybe because I am very stubborn, very independent and downright bull-headed? God may be using me as a tool?  I don’t know.  In many ways I see the MS as a gift. I know this may make many of you question my sanity, but it is how I feel. Life is a gift, therefore, whatever I learn from it and through it, is a gift.

This is quite simply, my story and mine alone.  Keep in mind that MS affects everyone differently, that no 2 stories are the same. That it can strike at any time and can affect any part of the body. A diagnosis of MS does not and should not however mean a life that is cut short, that this is only in the most extreme cases due to complications of the MS. It is not to say life will be easy, it could very well be a constant struggle for many. It is my hope that strides the being made today will continue and that a cure will be found for this disease. Or at the very least, something that will alter its course.

It is also my hope that you will take the time to read my journey with this difficult disease in hopes that you will gain a better understanding of not only me, but someone you may know, or have yet to meet, that is struggling with MS.

Thank you, and I really would like to hear from you – especially if you are dealing with a similar situation.  It took me awhile to realize I needed to share, maybe you want to?

In the beginning

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