My greatest fears
My Multiple Sclerosis first manifested itself eighteen years ago. I had to wait close to a decade for a full diagnosis, meanwhile it got steadily worse. I now struggle to walk, I have constant pain, muscle spasms, have trouble sleeping and it affects my mental faculties: I have trouble digesting information and thinking straight, I have what's called 'brain fog' most days.
Within the past few months it has started affecting my eyesight. At times I can get extreme tunnel vision and only see a tiny speck in my now limited field of view, sometimes I have a dark spot in the center of my vision. Other times I struggle to focus. This brings me to one of my biggest fears: losing my eyesight.
Optic neuritis
Optic neuritis is an inflammation of the optic nerve. The way if can affect you varies from blurred vision to a total loss of sight. It can affect one or both eyes. Colour vision is affected, some colours appearing more washed out or muted. Light flashes when moving the eyes is also a familiar symptom. The effects can last from hours, to days. In rare cases much longer. A course of steroids may help to alleviate symptoms, but then you run the risk of the many side effects from the medication.
As a keen artist having problems seeing is an obvious burden. As a writer, I can somewhat mitigate things with technology such as voice to text. Everyday things such as walking from room to room brings challenges such as bumping into furniture and doorways. Being unable to read with my daughter would be heartbreaking, which brings me onto my biggest fear.
Have I doomed my children?
When my beloved and I got together twelve years ago, she was aware of my MS. Regardless, at the time I was not so ill and we decided to have a child together. Our son was born ten years ago. Although my health deteriorated somewhat, she pushed for us to have another child five years later. I was very reluctant: I have two sons from a previous relationship and our son together. Chances seemed high that we might have a girl. You see, although MS is not strictly hereditary, a child with a parent who has MS stands a greater chance of developing it themselves. Add to this the fact that, statistically, women are more prone to develop MS. Despite my reluctance, we went ahead and five years ago we were blessed with our daughter.
Pixie and I
I know that research is ongoing and new treatments are being developed and yet I often worry: prevention is always preferable to treatment and as things stand, there is no cure. It would break my heart to learn that I have passed on this horrible condition to any of my children, yet I feel worse for knowing the risks and going ahead with bringing my last two children into the world. I am not a praying man, but if there is a God, I ask that he keeps them free from MS.
Here is an M.D. who might be able to help.
source
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@gmuxx, It's amazing and a bit scary to think we can coast life having no idea the hardships others are going through. I was not aware of your battle with MS, the fact that you maintain such a motivating and upbeat (albeit sarcastic :D) personality here on steemit and over at MSP and the Fiction Workshop is a testament to your spirit and character.
I'm not going to say that I'm sorry to hear about your condition. I imagine you hear that enough as it is. What I will say is this:
All life is precious.
Thinking whether it was responsible to bring a child or any life into this world based upon the chances that something negative may happen in that life is a dangerous thought. It assumes that we are able to judge the real value of life for another creature. Something I don't believe we are equipped to handle. All life will hold value regardless of the valleys it may cross along the way. Including yours and your children.
Despite what you are going through, I'm sure you will agree that there is real value in your life right now. Would you give that up for anything? If your parents thought there may be a decent chance that you may develop MS, would you have wanted them to decide not to have you? I certainly hope not. The negative things in your life cannot completely overshadow the good things.
One more thing I would like to say is this. Worrying about the past and future often hinders one's ability to focus on the present. Of course we can do our best to plan for our future. But don't let it distract you from being the person you are supposed to be for yourself, your wife and your children. Pain (emotional and physical) is hard to live with everday. It kills a bit of our happiness every so often reminding us of better times before it's existence. Yet, in the times of pain, it becomes even more important to find the joy that family and life provide. Not only to create lasting memories for yourself and your family, but real joy is the best healing agent this world has to offer. Self-doubt and worry will have no part helping your body heal. Joy and peace at the beauty you have created will nourish body and soul. I think you know all this already. Yet sometimes it helps to be reminded a bit. Motivation and self-confidence are a cycle.
You say you are not a praying man, and yet I get the feeling that you are searching for meaning behind all of this. We all are, in our own ways. Prayer can be difficult. The concept of relinquishing control to an outside authority is frightening to some. Others find it pointless to pray to something they think allows all the hardship in this world in the first place. These and more are all valid concerns and questions. Concepts for another time perhaps. I will say this though, prayer has vast healing potential. Whether from a divine source or not, people focused in prayer have been proven to show increased healing capabilities. Simply having this conversation with you tells me that you are a man of faith. Except you may not feel you have found something worthy of such faith. It heartens me to see this. For when you do find something worthy, it means your faith will be rock-solid. Not like the fair-weather-believers you commonly see these days.
I don't think telling you what I think you should put your faith into will do any good at this point. Bible-thumping and the fear of fire and brimstone do not create true faith in any religion. Perhaps religion as a whole doesn't do the best job of describing what a true relationship with God is anyway.
If I had you take anything away from my ramblings here @gmuxx, it would be this: Don't let fear destroy your chance at creating beauty and joy on this earth. Even if you think the light of joy is so small that it will surely be swallowed by the darkness. Light is tricky sometimes and just may surprise you.
Sarcastic? Moi? Never =D
I mostly coast through not worrying about things I cannot control, but as I lie there unable to sleep in the twilight hours, my mind does wander. I believe every parent worries about their children, have they done right by them etc.
I have never been religious but as my years have unfolded I have become somewhat spiritual.
I recognise and face my fears, but do not let them rule my life.
Thank you for your kind words.
@gmuxx My man, wow only just getting to know you and thank you for sharing this. It takes strength to open up and I feel there's great value in informing people like me who have no idea what others are suffering from when it comes to these things. MS I hear about all the time yet didn't really realize what it would be like.
I know none of this really helps with the situation, however I do believe in our power to uplift each other simply with positive love and support. I'm so glad you and the missus are experiencing parenthood and whatever can be done to stop this from getting worse, I'm sure that the love a child brings to a family is a powerful medicine in itself.
All I know about is the cells of the body know what to do, they're designed to function optimally. So perhaps it's over simplified but my guess is that you keep feeding yourself and your beautiful family with whole, natural foods and stay away from all processed crap and toxins.. there's always a chance to heal and repair the body.
I once read it can take 7 years to completely refresh every living cell of the body and also that eyesight issues come from blockages as they are basically filters.
I'm sure you didn't post to get some stranger throwing out ideas and stuff, I justt felt I would offer something. Anything.
Wholeness and love to you and yours bro.
Thank you for your kind words. Glad to have made your acquaintance.
I don't have kids. I have a hard enough time thinking about anything happening to any of our animals. I can only imagine what you're going through. However, I don't think you should bring on sorrows ahead of time for things that might come to pass. Plus many with MS never have a fraction of the symptoms you are having. Teach your daughter to value and love life. Teach her that handicaps are nothing to be ashamed of. Make sure she knows it's okay to need help. Then if her day does come... or if it comes for one of your sons... they won't let it destroy their lives. They'll be able to say, "Dad lives with this and what a man he is. I can do it."
Thank you Bex.
I am sitting here at the keyboard, willing my hands to type something that would bring peace to your soul. While I will agree that you have some very valid worries, I will say that despite that, there is something about you as a person that would make your wife want to take that calculated risk. There is no rationale for it, but, on an emotional level, I want to duplicate something wonderful. Something that makes me feel good.
There is a risk anytime we give birth. My brother passed away early in life from cancer. I am not comparing. That would not be fair. Just saying that although we can weigh the risks, we just can never know.
I know you are worried about things you cannot do for your kids, but, on the other hand, you are still helping these children to grow up into better little citizens of the world because they will have a better understanding - they are usually more sensitive to others needs and learn many life skills from their own application of them.
Not the trade-off that you were looking for, but, in the big scheme of things, they will become better people because of you.
I am sorry that this is your reality, but, my hope is that it will go into remission and that they will find a cure. Easily said from this chair. I believe that your wonderful sense of humor and compassion for others will give you bonus points somewhere in life.
It has to.
Thank you for your kind words.
I try not to worry, for myself or my children. Sometimes it's hard. My children are wonderful (as one would expect any parent to say) but I am immensely proud of all of them. Though my life casts shadows, I do try to embrace the light.
It is abundantly clear to me, as an outsider, that you are a keeper of the light. You have very lucky children.
I gotta go with @nexusfyre - All life is precious.
I'm just getting to know you but already I know you are a man of value. Your children are blessed to have a father like you and the life which that will help them create. If a less-than-desirable gene is passed on to them they will still shine, as you do. They have an example to follow, and just like you they will succeed in whatever they choose.
Respect for you @gmuxx. Keep fighting the good fight. You're winning it and showing us how to win. I appreciate the light.
Thank you very much.
great post @gmuxx very lovely daughter and dad... wish you the best of healths... check my natural remedies and find some good tips to help you ...regards
Speechless. Hug
Es lamentable este hecho, pero adelante! lucha por tus sueños que nada ni nadie frene tus ganas de vivir y ver crecer a tus hijos, mucha suerte y bendiciones para ti, un abrazo!
I feel you @gmuxx I have a cousin that herself was diagnosed at an early age and with similar circumstances to yourself. So although I could never really know, I have a small comprehension. I respect your strength, honesty and sense of humour and the combination of all three is a powerful weapon against any struggles you face. Steem on my friend!
Thank you very much.