When Lynn and I were dating, I knew that his father had only lived to be in his forties and that he died from complications of MS. Having a medical background, I had a vague, general knowledge of the condition but primarily just enough knowledge to know that it affected mobility and the eyes and I had had a few employees make accommodate requests related to memory. I knew that genetics was a factor, but not an absolute, in determining if he would also suffer from MS. I also knew that while Lynn had his vises, he was good about what he ate and he exercised regularly; so, in my opinion, he was more likely to have complications from his smoking than he was from having MS. I seriously considered all these factors and went into my marriage with full knowledge of what I might encounter. I actually was very reluctant to get remarried, not due to the MS, but due to the fact that marriage was so difficult and even if you tried your best, you can’t control the other party. When I finally decided to marry Lynn, I went into marriage with a full commitment to staying married for sickness or health, richer or poorer, etc. I had survived one divorce and didn’t want to go through another. In other words, my fear was not of the MS but of the relationship difficulties itself.
And, I was right to be concerned. Those first few years were VERY difficult trying to blend two families; taking two very independent and totally different personalities and trying to learn how to compromise and adapt. We struggled. We had counseling. We became distant and we sought and found ways to become closer. We had to work at it; it did not come naturally to either of us. We were both very afraid of being hurt again and therefore, afraid of totally giving ourselves to the marriage. After all, we both knew how it felt to have loved and lost; but throughout it all, whether or not he might have MS was never a factor.
Then, one day I found him comparing how fast he could wiggle his fingers on one hand as compared to the other. I could see the difference. He had seen a physical therapist about occasionally having “drop foot” after exercising. He had complained of numbness and some weakness in his left leg which was attributed to sciatica. I asked him during those occurrences if he had mentioned his family history of MS and he said that wasn’t what it was and his doctor had his family history. I knew then; however, that he had MS. My daughter, who was in nursing school at the time, and I talked about the fact that we both believed he had MS. Even his son, suspected it but Lynn was in denial. I finally got so frustrated that I confronted him about my concerns and demanded that I be allowed to go with him to his next appointment because he would never give me a straight answer about what was discussed.
As it turned out his next appointment was with a cardiologist (he also has mitral valve prolapse). The doctor asked him how he was doing; then, he asked me. I told him Lynn’s heart was fine but something was wrong with his nervous system. Lynn shot me a look of daggers but the cardiologist promptly set us up with a neurosurgeon because at the time, I thought it was possible it could be a disc issue (since he said MS had been ruled out by his doctor already). The rest is history. Blood work was done; as was a MRI and a lumbar puncture, and as we were driving home from an anniversary visit to the beach, he got the call that said it was MS.
I already knew in my heart what the diagnosis would be and I think Lynn knew but didn’t want to know. However, actually hearing it still kicked us in the gut. I have to be honest that fear of what was ahead did cross my mind. Lynn and I were distant emotionally at that time because he would not share his thoughts or his life with me. He kept me at a distance. I think he was afraid I would leave if he got MS. His parents had divorced while his father had MS and though I don’t think the divorce was due to MS, it probably played a part in it. However, for us, it had the opposite effect.
I became Lynn’s advocate. I shielded him from too much information (at his request; he still wanted to deny as much as possible); I did all the communication with the doctors and healthcare facilities. He finally recognized that he needed me and he let me in and though that process we are closer now than if he had not had MS. If he had not been diagnosed with MS, who knows if our marriage would have survived? I like to think it would have because we are both Christians who are totally committed to staying together but I’ve learned you can never say never…about anything.
Someone recently asked me for advice on what to do about her situation. She had been with her boyfriend for several years and they were planning to be married. Then, out of the blue, he was diagnosed with MS. He was learning to cope but she was really struggling with fear of the future--fear of whether she had the strength to deal with what might come such as being the sole breadwinner, having to parent alone; the grief of watching someone she loved deteriorate physically and maybe mentally. She seemed to be seriously considering running away. I understand her fear. Being the partner to someone with a serious health condition is not easy. If it’s serious enough to result in death, you face the fear of being alone and the pain of loss. If it’s like MS, and the person is likely to live out a long life, then it’s the fear of financial burden, caring the weight of greater responsibility, knowing that there is much you will give up related to plans you made for the future. MS is not something that your partner gets; it’s something the partnership has. One partner cannot be affected without the other being affected as well. Each “has” MS—just differently.
However, it’s my belief that MS is not the cause of relationship breakups. It’s a factor, true, but not the cause. The cause is in the difficulty of making a commitment and staying with it. It’s in the belief that if something hurts too much, that it’s better to remove the pain than live through it. Pain is a warning sign of a problem. Fix the problem and the pain goes away. But what if you can’t fix the problem? Then, you learn to manage the pain and you create a new normal. Some people can do it and others can’t. MS is a mean, rotten, horrible medical condition. But so is _____ (fill in the blank). Whether your marriage survives or not, is based on how committed you are to making it work; how flexible you can be with adapting your expectations; how centered you are on “me.” If you split up, chances are if MS was not an issue, something else would have been. It’s not having MS that’s the problem; it’s the people in the relationship.
I made a commitment to God first and Lynn second that I would stay with him “till death us do part.” I intend to do that if it’s in my power to do so. I may not always be happy and content, but I also won’t always be sad and disgruntled….but then who is in any marriage? To the person who asked me what to do, I say, “Would you have married him if he had any other medical condition? Weren’t you expecting life after marriage to have its challenges? If so, then don’t let the diagnosis stand in the way. You’ll adapt and learn to adjust to change, moment by moment. Just commit to be successful, find a support network, rely on God if you are a woman of faith, and know that together you can face the future with greater strength than you can alone. Good luck and God bless you both.”
How do you feel before getting an MRI done?