“In Sickness and In Health” The one marriage vow I thought would come after 20 years of marriage, not 4.
Media has distorted our perception of love and marriage. It is impossible to have candlelight and rose petals every Saturday night. These are standards that NO ONE can live up to.We see the Twilight series and think, love should remain sexual, intense and volatile. That is infatuation or lust, not love. Love is deeper, stronger and calmer. It transcends the physical. It is knowing you would give your life for theirs. It is looking up at each other and knowing exactly what they need, before they even say it.
Love is work, maintenance, understanding, compassion, empathy, solid, monotonous, enduring, hard. Most importantly love is unconditional.
This Blog entry is about my view of marriage/love and disability. When I say marriage, it for you to interpret in whatever way you want. Relationships come in many different forms, so using this term was easiest for me.
When I was 25, my friend threw a party for me. I was sitting on a blanket playing with my friend’s son, I looked up and realized that he was the “one”. If you knew the backdrop of the story, you would have found this funny. A Melrose Place moment, as it were.
Anyway, we got married after 2 years dating, 2 years living together and had our first child after a year of marriage. He comes from a very functional family, which made it difficult for us to communicate effectively. I figured; if we weren’t dealing with broken dishes, drunken fights and abusive language, we were ok. His family doesn’t really argue, so there was no example for him to go by.
I had to learn how to communicate in an effective manner, to build an argument like a debate, rather than a brawl. When we had our first daughter, I knew I wanted to stay home with her. We agreed I start my own business from home. This was difficult as it was a significant loss of income and a significant increase of pressure on him. As usual, he was supportive and encouraging.
When we had our second child and the pain started, I wasn’t able to do all the things I wanted. He was skeptical about the severity, intensity and longevity of the pain. He was getting frustrated with the Doctors and the inability to “fix” what was wrong with me. We started to pull apart. I couldn’t talk to him without him reacting. I started to pull inwards more and more. I became depressed and sad. I was an immediate failure at what I wanted so much, to be a good wife and mother. Words cannot ever express the damage to my self-esteem, it was a daily struggle to keep my head up.
At the 2 year mark of the disability, it was clear: either get counselling or divorce. We got counselling. It worked. He was able to hear me when I was talking, not listening, but actually hear me. I finally told him, I needed him. This was terrifying for me. It was like swan diving off a cliff and so very, very afraid that I would not be caught, but I was.
Even though he has suffered and still does because of me, he has gained some good things too. He has a very involved relationship with his daughters. He knows what their favourite foods and colours are, what their teachers names are, who their friends are. They love being around him and know they are valued. Not to say that he wouldn’t have been a great Dad if I hadn’t been disabled, but it certainly sped up the process.
I feel tremendous guilt regularly about what he has had to put up with. I was an active woman. I loved to travel, go dancing, have people over, do things. I was never the person who wanted to lie by the pool and tan. I would have gone to every event or tried something crazy. In the past few years, we have been limited in what travel I can do, where I can go or for how long.
I try to make sure he has enough things to occupy him outside of me. I encourage him to go out with his friends, go on trips, to maintain a relatively normal life. I try not to ask too much of him. Slowly, I have been able to gain more independence and the load has lessened.
What Is Marriage And Love?
A few years ago, a family member was talking about marriage and how to keep it together. She mentioned that it was “date nights” and “quality couple time”. Another family member responded by saying; “Actually, it is marriage counselling and getting through the s**t” She was right.
Two examples of Hollywood marriages that have suffered a physical or mental trauma but have survived are the Reeves and the Reagan’s. Christopher Reeves could not even move his arms and his wife was by his side until he died. Ronald Reagan suffered mental trauma but his wife Nancy stayed with him and cared for him. In so many other cultures around the world, they don’t even consider “date nights”, “snuggle time” or “love notes” as part of their marriage/partnership. For them, it is about survival and commitment. It is the realization that to be blessed with a good spouse and children is enough.
My girlfriend suffered a back injury while in the first year of her marriage. She lived in a very rural spot which exacerbated her isolation. Her new husband was less than understanding about her situation. She beat herself up, loading up on self blame. She asked me what was going on and why was he being like this? I asked her “if you had a double mastectomy tomorrow, would he still find you beautiful” She knew the answer.
If nothing else, I have learned this from my disability: My Husband is My Home. It doesn’t matter where we are, what we are doing or where we are going, if we do it together, it is going to be ok. We fight and I piss him off with dismal regularity. He probably wants to walk out the door at least every month (or day, you should probably ask him). He certainly didn’t sign up for a disabled wife, whose body is scarred, burned and broken. I feel constant guilt about my appearance, but it is of my making. He has never, ever intentionally made me feel self conscious about my appearance.
He has taught me about love, because he is still here. I know a man like him, actually a person like him is very, very rare. I don’t need to look around for something else, because what else could I want? I am so truly blessed. If I had to go through this Chronic Pain to truly understand real love, then every day was worth it.
Some Coping Strategies
I hope this article is able to let other pain patients know it isn’t ok to have abusive comments thrown at you. It isn’t ok, to be left alone all the time. It isn’t ok to be threatened with abandonment. It isn’t ok to be ignored. You should still be treated with respect. If you don’t feel you are, then I suggest counselling. It certainly helped us. Remember to let your partner go out on their own. Let them have freedom from you. Don’t be passive aggressive with your condition. Don’t try to hide your feelings, let them out constructively. Be patient and forgiving, if they start to get angry. Let them get their issues out on the table and don’t interrupt them. Validate their feelings. Try to really hear what they are saying. If you need help, ask for it. Don’t be a martyr, that will only make things worse. If you think there is something you need, like more child care or a cleaning lady, discuss it with your partner and work it out. Pushing yourself too hard will cause you increased pain, longer recovery time and resentment. So, get help if you need it. If you feel that a certain day is a big pain day, then say “Today, I am in a lot of pain so I may be cranky and short tempered, so please be patient with me.” This helps them to understand that it isn’t them you are mad at, it is the pain.
For those who are married to people like me, it is ok to be angry. It is ok to be sad. It is ok to feel cheated. It is ok to feel loss. Those are all valid emotions. It is important to recognize the difference between manipulation and genuine need. It is essential you know, many of the comments or intonations that come out of a pain patients mouth, may be distorted by the physical pain. Lack of desire, is not about you. It has to do with the patient. Many times, we can’t help the physical reactions as we are just exhausted with fighting pain. Understand we feel so very vulnerable and scared all the time and it probably has nothing to do with what you have said or done, but just an inner feeling. Sometimes we may respond to something in what seems like an irrational way. For example, my husband had his bare feet on the carpet and it felt like fingernails on a chalkboard. It set my whole system on fire. I don’t know why, and I know it seems irrational but I had to explain what was happening and he understood. Thought it was wierd but understood. If they tell you that it is a pain day and to be patient, be patient. Don’t take it personally. This time it really is the “It’s not you, it’s me speech.”
I hope these comments are helpful. Marriage/Partnership is a very hard thing to be successful at, regardless of pain. It takes commitment, dedication, work, empathy, compromise, patience and humour. The unrealistic expectations set by our culture, in regards to love are impossible to reach. Add in a dash of disability and you have a recipe for disaster. I guess, my advice is this, take a good long look at yourself. Be honest about what you have said/done in your situation. Think about how you would feel to be on the receiving end. Then talk about what your concerns are. If you feel you are not able to effectively communicate your emotions or thoughts, get counselling. Work on yourself, work on your marriage, have patience and understanding.
Love is truly a difficult thing to find and even more difficult to hold on to. It is not what Hollywood portrays……but if it is real…..it is much,much better.
“I may not be a smart man Jenny, but I know what love is” Forrest Gump