• TheConfused Father

Why marry a girl with Multiple Sclerosis?

This is actually a question that has been proposed to me several times since Erin and I first began our relationship. I am sure that sounds like a strange question to anyone who doesn’t personally know someone who has been diagnosed with MS. Too that I will tell you the story of the first person that asked me what I was thinking dating her. About a month into dating Erin, she came to my dorm room one night and told me that she had lost the ability to see out of her right eye. She was going to go to Kansas City for some emergency medical attention and wanted to let me know in case I was looking for her. I remember very clearly that she sounded way to calm about something like losing vision in one eye. But I tried to remain calm and asked who she was going with. She told me she was going to drive herself. I am pretty sure my response was something along the lines of, “You can’t see out of one eye and you are planning to drive 2 hours to a hospital at 11 o clock at night, by yourself? Let me get my keys!” We then spent the night in the ER together while she was given a heavy dose of IV steroids. She was experiencing severe optic neuritis, which is an uncommon condition where the tissue surrounding the optical nerve swells to the point where it is crushing the nerve. This causes extreme pain and in worse case scenarios temporary loss of vision. Well, that is to say, it is uncommon unless you have MS. I think we have been to ER 3 times now for optic neuritis and there have been several other times where the symptoms were present, but Erin opted for not going to the hospital. See optic neuritis will usually go away on its own as soon as the swelling of the tissue subsides. So, if you can stand the pain it will go away after an unknown period of time. And while steroids help the symptoms subside faster. Such heavy doses also have heavy side effects like insomnia, lethargy, and loss of appetite just to name a few commonly seen in Erin. Also, there is a high chance to develop something called steroid myopathy. Which, while I have never experienced myself, Erin tells me it feels like all your bones are being broken over and over again. That night in college was before we knew all this though. So like I said we spent the night in the ER, then 2 more days in the hospital under observation. Then once she was finally released she still had five more days’ worth of steroids to take. So we went back to my parents’ house since it is quite there and she didn’t want to be on what was essentially bed rest in her dorm room. Thankfully, my parents were very understanding and so were our college professors. So on the first day, we were at home, a hospice nurse came out to the house to walk us through cleaning the pick line (which is a long IV ran directly to the chest through an artery in the arm) and administering the steroids. While she was there, she talked to my parents and flat out told them that they needed to do anything they could to get me to break up with Erin. She told them that there was too much suffering in the future with a girl like her. My parents of course passed what she had said on to me but told me that I should investigate what the nurse was saying and make my own choice. And investigate it I did. What I found was honestly terrifying. There are a sizable number of people that have one issue with Multiple Sclerosis in their life and then never have another problem with it again. However much more commonly it is a long, ongoing battle for the rest of your life. Symptoms will show themselves for seemingly no reason and then stick around for an unknown period of time just to disappear again randomly if you are lucky. Otherwise, your options are to change what medication you are on because it is no longer working. Or try to suppress it with a dose of heavy steroids. All the while knowing that each time you have an attack, it is causing permeant damage to your nervous system that will make future issues more severe. Most people with MS will spend the last years of their live-in wheelchairs. Years that come on more quickly than they should. The average life expectancy of someone with MS is 25 to 35 years after they are diagnosed. And Erin was diagnosed at 16 years old. This is the information that I had in front of me while trying to decide whether to give up on a relationship that I had just begun with a girl that was one of my best friends at the time. All of it sounded awful.

I lost a lot of sleep for the following weeks but the conclusion I ultimately came to was this. Erin was fun to be around, I mean a lot of fun. And I know what you are thinking when I say my college girlfriend was a lot of fun, but that is not what I mean. She was funny, playful, and one of the first girls I had ever met who would challenge me intellectually. She was brave, adventurous, and pulled me out of my comfort zone on a regular basis. She was honest, kind, and always the first person to volunteer when someone needed help with anything, even if it was someone that she had never met before in her life. She was easily the most amazing person I had ever met in my life (and she still is). If she was going to go through all those things herself anyway, wouldn’t it be great to at least be the one there beside her, trying to help her get through it? No one should go through something like that alone. We would just have to make up for the bad times with better memories while we could.

So that is what we did. We learned to rock climb, scuba dive, and skydive together. We hiked the mountains. We explored a shipwreck. We took dance and yoga classes together. We got married and got a dog and a mortgage together. We had adventures whenever we could and when we couldn’t we'd cuddled up and watched TV together. We made a lifetime worth of memories then kept going. And when the day came, in that doctor's office, that we were given the choice as to whether we could take a chance and keep going. Or play it safe and die off slowly. She put her hand in mine and we said bring it on. We worked through those challenges together because that is what a marriage is. It’s not picking someone because it is convenient, it's not giving up because statistics say you are going to lose. It's about making the best of what you have in any situation, no matter how grim, TOGETHER WITH SOMEONE YOU LOVE. Have there been somethings in my life that would have been easier if I married someone else? You are damn right there are, but I will guarantee that I would not be half as happy as I am today with any other person on the face of this planet. That is why I married a girl with Multiple Sclerosis, and if someone comes along in your life that you feel that strongly about, you should too. Just make the best of the time that you have with them. And when the time comes, and things get hard, be there with them. During those times remember that person would be going through this whether you were there with them or not. While they may lash out at you at the time because the universe is picking on them. Deep down they are glad that you are there with them. And if they make it through those times. The memories that the two of you made with be something incredible. If they don’t, I am sorry, but at least they didn’t have to go through it alone. So thank you for that, you are not alone. Misery loves company, not because it makes the miserable person feel better that you are suffering. But because it makes them feel better someone they love is there to see it through with them.

So go make some life better, don't let the people you love suffer alone. But what do I know, I am just another confused father from Kansas wondering...



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