When we first found out that I may have MS we looked up some information about it online. One of the first things that we found on the MS Society was that MS was like the uninvited, unwelcome "guest" that will never go away. If you could imagine having such a person in your home it would most definitely have an effect on the relationships you cherish the most. This is just the case with MS and marriage.
To say that having MS has not effected our marriage would be just silly at best, or completely lying at worst. It has. It has effected the way we interact, the way we communicate, the way we divide our responsibilities, the way we relate to one another, and so on.
It has been very difficult at times, and very rewarding at other times. Every marriage that has gone through similar circumstances, whether it be a chronic illness or cancer, or some other trauma knows the ups and downs that it brings. Dealing with the changes can either tear you apart or bring you closer together. I know we are able to say that though it has been challenging by the grace of God (and I mean that from the bottom of my heart!) we have been brought closer to one another because of the MS.
In the worst of times Nickie had to help me get dressed and undressed, bathe (not nearly as sexy as it sounds by the way), help me walk, get into and out of cars, etc. It was during those times that Nickie was my wife, but she was also my helper in a way that I was very uncomfortable with to be honest. To rely on someone that much is a very humbling experience and can lead to some very bitter feelings. It can also lead to feelings of such thankfulness. It was during this time that I truly understood for the first time in our marriage just how much Nickie loved me. And though that may sound like nice and all the fact of the matter is is that she didn't have to do any of it. There are stories of spouses leaving because the responsibility and burden is just too much and they don't want to have their lives bothered with it. Nickie had that option. In fact, there was times when I encouraged her to do so. It seemed as if it was so unfair that she had to sacrifice so much of her life and at such a young age. But to her this was living up to our marriage vows that we said before other people and most importantly before God. She meant every word and now was living it.
Our lives changed as far as the boys are concerned too. I was now the one at home helping to do homework, getting the boys to do chores and keep schedules and that sort of thing. This has been hard for me because I am not made to do this. So if I do it well it is because I have grown into the job. Nickie pitches in a lot to help and to encourage me.
I try to in turn help and encourage her. She is now the full-time employee, the "bread-winner" if you will. Nickie would work regardless of me being sick. But because she works full-time as opposed to part-time she misses out on some things that mom's do. It has been tough on her too. She likes to work, but she misses the school parties, helping with homework, being at home when the boys get home from school, helping out at school or church.
Sometimes communicating can be very trying. Nickie will ask me to do something and I will forget. She may ask me about something and there are times when I look at her with a blank face like she is from some distant planet. I don't remember things as well as I was did. She tries to encourage me to write things down and she will write things down for me at times. This can lead to some rather hostile responses on my part. There have been a lot of hurt feelings because of my unwillingness to admit I need some help in this area. I have learned, albeit a long process to be sure, by Jesus' example of humility. The fact is I need help and Nickie is my biggest helper. I need to be humble and accept that help in the spirit in which it is given.
There are times that Nickie is very lonely. It is hard when your spouse has an illness that not only effects your lives now, but will effect it into the future-it will never go away. I will never be the person I was many years ago. We don't know what our "golden years" will be like. We might not even have any "golden years" together. And if we do what will they be like? Will I be able to get around? Will I be able to communicate in any meaningful way? Will I even be alive?
These are questions the most couples don't think about. We take so much for granted. And who wants to really think like that anyway? We were forced to and I think we are better for it.
In the musical "Evita" she sings a song toward the end called "You Must Love Me". In the song Evita laments about her cancer and how this is not what her and her husband planned on. There were so many things they wanted to accomplish. There were so many dreams they had for the future. In the end they were not going to be to accomplish any of them together. She marveled at her husbands loyalty and love for her. The only reason he didn't leave her was because he loved her. He loved her not for what she could do, but for who she was. It was the best possible gift she could get.
In a way I feel like that too. Nickie and I had plans and dreams for our future and they have been altered, changed, or just no longer possible. And yet in spite of that Nickie still loves me and I know I love her more today than ever. That is the best gift we could ever give to one another.
Showing posts with label Multiple Sclerosis. Show all posts
Showing posts with label Multiple Sclerosis. Show all posts
Tuesday, December 18, 2007
Monday, December 3, 2007
My Chronic Companion MS
Some of the best ideas come from other people. Let me explain.
A friend of mine wrote to me last week saying that she was glad that I had started a blog and was wondering if I was going to do any writing concerning my battle with MS. To be truthful I had not really thought about it. I don't like talking a whole lot about it because to me it gives this part of my life a bit more attention than I would like to give it-it gives more life to the MS. As far as I am concerned it is merely a part of my life and I don't want to be defined by it.
However, since she is one of my best friends I started to rethink my original position. So this is what I have decided: over the next few weeks I am going to give you an insiders look into what it is like to have a chronic disease. I will give you some history as to when I came down with it, and then I will address what it is like to live with it.
I will also write as to how this has affected my career, my marriage, and the boys. This in many ways is not going to be the easiest thing that I have wrote about so I ask you to pray for me. If you have any questions that go unanswered please let me know and I will do my best to answer them. So without further delay...
I remember the date quite well because it was our 10th wedding anniversary, November 2, 2001. This is the day that my body was going to tell me in some very obvious ways that not all was well. I was in our living room deep in thought (really) in front of the fireplace and Nickie came in to see what I was doing. To her frustration I did not respond. The problem was I couldn't. I could not move, I couldn't talk or respond in any way. Looking back it was as if I had had a stroke. With Nickie's help I eventually got up and started to walk around. I was leaning on her and it was like I had just come out of a very deep sleep.
This happened a couple of more times as the week went on and I was eventually taken by ambulance to the hospital. They couldn't figure out what was going on so I was transferred to a hospital in Seattle (at the time we were living in Enumclaw, Washington which is about a hour SE of Seattle).
The doctors there told me to seek the help of a psychologist. Nice! I was a head case. Eventually I saw a doctor that set up an appointment to get an MRI on my head. He was so concerned that he pulled a lot of strings to get the appointment that day!
That led to several months and a couple of years in different doctors offices. We heard everything from the I need to see a really good counselor, Lou Gehrig's disease, chronic fatigue, possible MS, probable MS, nothing at all, and finally a formal diagnosis in April 2005.
During the first two years I was really sick. Nickie helped to dress me, helped me walk, there were days that I laid around and couldn't do anything. These were very lonely days for Nickie. I would go for days that my cognitive skills were rather lacking-that is to say that I was not capable of thinking much less talking. These were the dark days and we are very thankful that those two years are over.
If you have any specific questions concerning the symptoms of MS visit the official MS association website. Next week I will let you know how living with MS has affected my career path and working in general.
A friend of mine wrote to me last week saying that she was glad that I had started a blog and was wondering if I was going to do any writing concerning my battle with MS. To be truthful I had not really thought about it. I don't like talking a whole lot about it because to me it gives this part of my life a bit more attention than I would like to give it-it gives more life to the MS. As far as I am concerned it is merely a part of my life and I don't want to be defined by it.
However, since she is one of my best friends I started to rethink my original position. So this is what I have decided: over the next few weeks I am going to give you an insiders look into what it is like to have a chronic disease. I will give you some history as to when I came down with it, and then I will address what it is like to live with it.
I will also write as to how this has affected my career, my marriage, and the boys. This in many ways is not going to be the easiest thing that I have wrote about so I ask you to pray for me. If you have any questions that go unanswered please let me know and I will do my best to answer them. So without further delay...
I remember the date quite well because it was our 10th wedding anniversary, November 2, 2001. This is the day that my body was going to tell me in some very obvious ways that not all was well. I was in our living room deep in thought (really) in front of the fireplace and Nickie came in to see what I was doing. To her frustration I did not respond. The problem was I couldn't. I could not move, I couldn't talk or respond in any way. Looking back it was as if I had had a stroke. With Nickie's help I eventually got up and started to walk around. I was leaning on her and it was like I had just come out of a very deep sleep.
This happened a couple of more times as the week went on and I was eventually taken by ambulance to the hospital. They couldn't figure out what was going on so I was transferred to a hospital in Seattle (at the time we were living in Enumclaw, Washington which is about a hour SE of Seattle).
The doctors there told me to seek the help of a psychologist. Nice! I was a head case. Eventually I saw a doctor that set up an appointment to get an MRI on my head. He was so concerned that he pulled a lot of strings to get the appointment that day!
That led to several months and a couple of years in different doctors offices. We heard everything from the I need to see a really good counselor, Lou Gehrig's disease, chronic fatigue, possible MS, probable MS, nothing at all, and finally a formal diagnosis in April 2005.
During the first two years I was really sick. Nickie helped to dress me, helped me walk, there were days that I laid around and couldn't do anything. These were very lonely days for Nickie. I would go for days that my cognitive skills were rather lacking-that is to say that I was not capable of thinking much less talking. These were the dark days and we are very thankful that those two years are over.
If you have any specific questions concerning the symptoms of MS visit the official MS association website. Next week I will let you know how living with MS has affected my career path and working in general.
Subscribe to:
Posts (Atom)