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 toknow. 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.
continue reading at: http://multiplesclerosis.net/blog/marriage/
Becoming A Family Caregiver
BRIDGING THE GAP BETWEEN HEALTHCARE AND HOMECARE