This is Donnie and I am writing for me tonight. I have been staring at a blank word document page for what seems like hours, the blinking cursor mocking my very existence as I struggle to put into words the emotions I feel and the thoughts that I have for my family , my wife and myself and of my loathing of CIDP and the journey we must all take together.
I have noticed over the last weeks that so many people say sorry, say prayers and say that they wish that they could do something but they don’t. That is fine and I understand. It is human nature to worry only when one is affected by an event and not someone else. I do not get bitter and I will not. The words we receive do indeed mean so much to us.
I guess when I see so many people donating time and money to replace a camera, fund a trip, help pay for a sex change for perfect strangers it kind of rubs me the wrong way and then those the closest to you do nothing at all I am at a loss for words. But it is still early in our journey and people still have to come to grips and have to learn what the hell CIDP is to even feel one way or another. So time is a good thing I guess.
I just wish that more of my fellow humans could and would put their hearts in our situation and feel what we feel and fear what we fear. It is a dark and unknown path that we take together and Gwen more than any of us is the rock and foundation of our lives and our future.
My family, Jake, Vanessa, Paige and our granddaughter Rebecca will all make it through together. As long as we have each other that is all that matters.
One of the goals that I personally had when starting this blog and this page was to be honest about all of our feelings. Gwen may not always agree with my thoughts or my responses but they are my own. We do not want to needlessly worry people, but at the same time we do not want to sugarcoat anything either.
Chronic Inflammatory Demyelinating Polyneuropathy is a downright NASTY DISEASE! It is very numbing, painful and it really sucks to see someone you love loose what they once were. It hurts even more to see how strong they are and how tall they stand especially when they can’t and you try to so be there for them every minute of every day but you can’t. You try to stand back to make sure they keep some resemblance of independence but sometimes you cross the line in helping that you end up hurting their feelings.
The one you love slowly deteriorates and there is NOTHING that you, they are anyone can do about it and you have only one last hope and the fear of that hope vanishing is constant and all because of home, family and money. The very things we all take for granted can take away the thing you need the most because you have to keep them together.
CIDP makes me so aware of things that so many other people take for granted. The joy of doing something as simple as dancing is magnified tremendously when you live with the knowledge that you could very well be in a wheelchair right now instead of shaking what your mama gave ya. The simple act of getting into our out of a vehicle is not so simple. Checking the mail takes the energy you were saving for the rest of the day.
As honest as I’ve wanted to be with you all, I have to admit that we haven’t been completely honest with ourselves. I haven’t been lying to myself per se, but I haven’t been allowing myself to feel the myriad of emotions that go along with watching the one you love develop CIDP and everything that’s happened to her over the past few years. Ever since the beginning of the year, Gwens, ‘PUT ON YOUR BIG GIRL PANTIES” approach to dealing with things has seriously come back to bite me in THE ASS in a big way as I’ve finally reached my breaking point. I’ve been so angry and overwhelmed by all the bad things that have happened and the negative emotions flooding over me that, for the first time, I truly have begun to feel the stress and the fatigue of watching my Gwen suffer from CIDP instead of living with it. Even though I’m a self-proclaimed writer, I cannot even begin to find the words to describe how truly awful that this is for me!
Since the beginning of the year, I have seen Gwen’s life become a nightmare. I wait for the bitterness, frustration, and regret that I think has been boiling over in the form of snappiness and a quick temper but I never see it from her. Never see it! Can you imagine what that does. It lifts me up more than she will ever know and it gives me hope that she will make it through this and that we will all do it together in spite of anything.
I want you to know that the last year and almost two have been utter hell for Gwen but she stays strong in spite of it. To get something like this and to not know why and to have gone through every convention treatment while hoping that each worked and then none working to me, to stay positive through this is astounding!
No matter what she and I have hope. That is all that we have and that is fine. Hope itself can save a world and it can save her. I have to believe it.
Needless to say, I’ve been depressed off and on but she and my family keep me sane and in check. I always write of positive things for other people to read and to learn from and I have found myself lately have to read and relearn what I have written to be there for my Gwen.
The truth is, I’m just like everyone else, I am human and I hurt, I cry, I feel and I fear but I also have faith and hope and the strongest woman I have ever known. There are days when things are easy and life is good for the both of us. There are other days when Gwen struggles just to put one foot in front of the other. All we are doing is trying to make sure there are more good days than bad for Gwen, sometimes it is not an easy thing to do.
I’ve come to realize though that the important thing, the thing that matters above all else, is simply to keep trying and keep loving. With the dawning of the day comes the opportunity for a fresh start and a day filled with hope. There are so many things about living with a demyelinating disease that we can’t control, but there are even more things we can. We can try to manage Gwen’s symptoms through lifestyle changes. Even something as tiny as a change in our attitude can make all the difference. One reason I have been writing more. By choosing to focus on the positive even though we are often swimming in a sea of negative, we give ourselves the hope we need to solider on through the darkest of times.
I ask all of you to please bear with me as I work through the issues I need to in writing on this blog, my personal blog and on Facebook. It won’t be easy for me and it sure as hell will not be easy for my Gwen, and they may not be the happiest things to read, some of them may even hurt but however I feel the need to do so on the off chance I might be able to help someone else. We don’t want your pity, butwe will happily accept your prayers!
I have a TON of articles from various sources I want to post. I’m also going to post more about the symptoms of demyelinating diseases and the various treatment options available, so keep an eye out for those. I have to admit, the thing I’m looking forward to the most though, is getting to make new friends for Gwen and I do love you all.
God Bless each of you and all of those to whom you are connected.
If you wish to help you can click this link (http://www.gofundme.com/jp9zg) If you can not please post a comment and a prayer….