For Macular Degenerates |
Learning to hope takes practice and perseverance
As we stumble down this long path of endurance
Learning to hope is like a child learning to play
With giving and sharing essential for every new day
Learning to hope requires the hand of a friend
Who is not afraid to say what is just around the bend
Learning to hope means digging deep in our soul
Praying not to find again a big dark hole
Learning to hope is, for some, a far off illusion
But attainable with courage to face our visual confusion
One year later, and I no longer feel alone.
The poem "Learning To Hope"
The twisting and turning MD road has straightened out at various junctions along the way. You may remember the stones which were to guide me along this treacherous road, and particularly that last one of ACCEPTANCE. I know now that I will never lift that fourth stone, that I will never accept the impairment of my vision, but I am proud to say that, with the help of my MD friends, I have found myself a different stone and it's name is ACCOMODATION. This I am learning to lift, day by day, as hope replaces despair.
Anger, fear, and denial will undoubtedly rise to the forefront again when my other eye turns wet as well. These emotions hopefully will not be felt as severely the second time around, and, perhaps will be easier to control, but who knows? This is a seesaw and they all go up and down, don't they?
Knowledge, support, and reaching out to others have held me together over the past 12 months. Distressing as it was, this period has delivered new Jolts of a hope that seems more realistic. They may be useful to you also as I pass them on, fully aware that I still have to face an uncertain future.
Who was the enemy? Why did it insist on taking away my light?
The enemy, of course, was DISEASE, a disease I knew nothing about. My ignorance turned to anger, my anger to despair, and eventually to a determination to identify who or what I had to fight. With every ounce of this newfound energy, I searched out all the information I could about MD and armed myself for battle.
I soon learned some basic facts: MD does not kill you; peripheral vision always remains; treatment and research are constantly improving. These very basic bits of learning made the future not quite so daunting. I had found out that knowledge gives you power, power gives you courage, and courage leads to coping skills in facing a new visual future. Think of it as a new beginning! Your vision of the world may change, but remember that, in the process, your other sense perceptions will be heightened.
You will always wish your doctor to be more communicative, but the poor doc will seem less ignorant as your questions become more informed, and your ability to understand less obtuse. The MD Support web site offers access to a wealth of knowledge about MD and other retinal degenerations. Make sure to read as much as you can before your next visit. Believe me, your doc will be impressed!
It is extremely difficult to walk this winding road alone.
Don't let feelings of helplessness and despair inhibit you from reaching for a helping hand. You need it. It is your salvation. Some helping hands are better than others, and you need more than sympathy. I remember my husband's sense of helplessness when, despite all the love and affection, he realized that he could not really help. I was still at the "I need to understand stage", and the helping hand I had to find had to be a knowledgeable one. Talking with others who share these same feelings brings a great sense of relief because they understand what one is experiencing. By linking hands your stumbling steps slowly become steadier, and you are not so afraid of what lies beyond the next bend in the road.
From morning to night we face visual hurdles within our daily routines. It is far better to share these deep frustrations than to keep them bottled up to ferment into anger. This is destructive, and we must be constructive within our new limitations.
MD Support can be very helpful in this respect. This second home is like an extended family, which can significantly communicate about MD. But keep in mind that you must also foster the friendships and loves you enjoyed before this disease struck.
Sharing lightens the burden. How very true!
As I progressed in my search for knowledge and became more accepting of support, I found myself trying to help others. Little did I expect, when I gave up my work, which consisted also of helping others, that I would find myself doing so again, and so soon, with people experiencing the very visual problems I was having. Through MD Support, I am now answering people from all over the world who need help and guidance. This work has become very important to me, and I am particularly blessed that it is a continuation of my past professional life.
This work, at times, seems the most important thing I have ever done or experienced in my life. However this does not change the fact that the past year has been altogether terrible but, as my reduced vision stabilizes temporarily, I find that I am surfacing from the sea of anxiety and re-establishing contact with the world around me.
Reaching out to others takes courage, positive attitudes, and a humanistic belief system. I was not sure I had this in me, but I was going to give it my best shot. You never know unless you try, and I was determined to do at least that. Everyone needs to love and be loved, everyone is basically a good human being, everyone needs a chance to be true to themselves and to others, everyone needs a sense of self worth, and above all everyone needs to be respected for whom they truly are, not by others expectations of what they should be.
I know that there are waves ahead that will submerge me once more, but I have proven to myself that I can, between waves, communicate with friends, accept a dinner invitation, go for a walk, and accept the challenges of surroundings which often now seem unfamiliar. This allows me to, at times, move away from my disability into the so-called "normal" world.
Fear, of course, remains but these Jolts of Hope which I offer you give me increased confidence in dealing with an enemy who does not seem prepared to quit.
Hopefully a cure will be found for MD within the next 5 years or so. Until then, my friends, please remember that knowledge, accepting support, reaching out to others, are your best coping tools for understanding and coming to grips with this disease.
Please visit our site, and you will understand everything I have just talked about. There is no better place than this MD community. I hope to see you there, and always remember that you are not alone with MD. Just reach out and find us!
MD Support