It was roughly 11 years ago that my wife was diagnosed with MS. I still remember that fearful and confused look on my lovely wife’s face when the specialist broke the news. I was as confused and fearful that “the disease”, that now has a name, will take my wife from me. I was preparing for inspiring my wife with a speech about “for better or worse, till death do us part”, you know, as you would see in a movie or some medical soapie on TV. Then, I was gonna get her some medicine and off we go. Problem solved. I was so wrong. This turned into a journey where our whole life is affected.
The main issue with MS is that it is a never ending battle. With most other diseases there is a definitive outcome, you get healed or you don’t. If you do not get healed, you either die or you have symptoms or impairments for which there are names and specific classifications (I wonder in which Paralympic class MS sufferers will be classified).
So our journey started. Initially you get scared that your wife will die or that the MS will turn into primary progressive MS and she will fade away fast. This is then replaced with the frustration of understanding what is the next relapse going to take from your wife. The hard part is also to explain to friends and family what are the symptoms as “your wife looks so good these days”. Understanding and explaining what your wife is “suffering” from becomes like a investing in the stock market. Just as you think you have it and you are going to make some money, something changes and your whole scheme comes crashing down. Now you have to explain everything over again as so much changed.
The only constant thing about MS, is the change. It is also the hardest part. Attempting to assist your wife, not knowing whether you are doing the right thing. In general men are ignorant fools. If there is not a big neon sign with a bright yellow arrow pointing at your wife chest saying “MS Hug in Progress Do Not hold too tight”, we will just barge in after a day at the office, shout the “Hello Honey” line, so the kids also know that you are back, sweep her into your arms and give her a stiff hello hug”. Wrong move!! A gentle re-assuring holding of the hands as you greet her would be enough, but then again us men are not good at these things. This is only one of the big predicaments that MS people face. The constant changes in their symptoms that they do not wish to share all the time. They fear that if they do, people will view them as seeking attention by complaining too much. They are not, I think if my wife really had to complain about all her challenges, I would probably be able to fill a library with all the things she could complain about. I must say the “fatigue” section would probably be the biggest.
Has it changed my wife? It has changed all of us! My wife, the kids and me. There are times that the kids understand, but there are often times that they just want to be kids. When they mess up, it creates a huge impact as the stress is felt on both sides. My wife will believe that she is responsible and the kids think it is their fault. Keeping the peace and everyone happy is as a big a battle as all the others.
Another big change, is understanding that constant support must come in many forms. Doing what is required at the right moment is once again a trait that men just generally lack, when it comes to their loved one. I generally get the feeling that I actually knew what to do, but ignored the feeling and then an opportunity to help passed. My wife then overexerts herself and we are all impacted by this. Hindsight is a bastard and so are us men, when it comes to these caring matters.
So I how do we go forward? I think each family finds its groove somehow. Ours have required that we slow down as much as possible. However there are times when we are challenged beyond our comfort zone and this is one such time. Me having to work overseas and my wife having to take care of everything just does not slow things down at all. Whether it will have an unbearable impact, only the future will tell.
I really believe that people with MS are very special. They fight an unseen fight that has a very uncertain outcome, yet everyday they have to climb that same mountain, using a different path to the top. Each and every day, without ever ever feeling normal again. I do not think anyone of us can understand the struggle to have flu like symptoms or inexplicable headaches, muscle aches, cramps, tiredness or a host of other non-explainable symptoms each and every day. And yet we witness the miracle of our loved ones fighting through this and still capable of supporting us and loving us.
I salute each and every MS sufferer that are part of a family and that needs to still do their part. This takes more than what we can ever imagine.
I love you my silent warrior. I hope I can be only half as strong as you are, if I ever have to carry a similar burden.