It’s Wednesday, the day when we talk marriage! I write a post, and then you all chime in by linking up your own marriage posts to the Linky below!
Today, please welcome guest poster, Alicia Reagan, who shares a touching post about disability and sexuality: her paralysis, how it has impacted her intimacy with her husband and what they are doing to be intentional about it.
You read about it. You hear about it. You have talked about it. Many are on this blog because of it. Your sex life is a dreaded and frustrated area. You are unhappy and ready to give up on it all together. I get it. I really do.
On March 12, 2009 my life drastically changed. I woke up completely paralyzed. The diagnosis: Transverse Myelitis – a neurological disorder where a virus attacks your spinal cord. My life would now be lived from a wheelchair.
I became disabled shortly after my husband and I had celebrated our 10th wedding anniversary. My hubby and I always had different sex drives, but other than a few conversations about my needs/his needs as we adjusted to married life, we really had no majors in our bedroom. Then paralysis came.
There really aren’t the right words to describe the emotional side of something so physically devastating. Woman are sexual beings and we already deal with enough insecurities as it is, but now add a physical problem and it takes a toll on your psyche. Muscles atrophy, your body shape changes, and you have the idea that everyone (including your husband) is looking at you like you are a nursing home resident!
I remember the first time we were going to be together sexually again. My body cannot move and position like it once did, sensations are gone and not what they used to be, spasms take over at the worst times, and nerve pain can rage and completely halt everything. “How are we going to do this?”, he asked. I answered, “I don’t know Honey. We will just have to figure it out.” Little did I know what figuring it out meant.
When a couple is fulfilled in their sex life and they find that intimacy there, that is wonderful. But when a couple is faced with a situation where they still desire certain things, but just cannot physically do what they did before, then it can be a very volatile area in their marriage. When your body quits working, it does not mean that your sexual desires stop. You have to find a way to work through this. This looks different for men and women because we are wired different. In the case of paralysis, we are even different in our physical abilities as a male or female. However, we are the same in the fact that all humans are wired for sexual needs in our relationships so this area must be figured out.
The first year I worried for his emotions so I just endured everything. I dreaded sex because I got nothing but pain….both physically and emotionally. It was hard to watch him enjoy something that I was not enjoying. I fought anger at what I could not do and jealousy towards him that, although our Iives had changed, he seemed more than happy in this area. I stayed silent. I was the perfect little martyr because I did not want to hurt him by telling him how much I did not like this part of our life anymore.
My silence and sacrifice was the wrong move! It made me feel so resentful of him. I would conjure up reasons why he was not being sensitive to my needs and he should be able to read my mind and know how I was hurting sexually. I never told him these things though he could feel it. He stayed very sweet and loving, but I was hurting.
One day, we were having an argument about something unrelated and he mentioned how distant I had become in the bedroom. Not physically, because I was a “good wife” and never told him no. But emotionally, he could tell I was different. It opened a flood gate of venom that spewed out of my mouth about how different and miserable and awful it all was and I just couldn’t deal with this part of paralysis. By the way, this is not really a talking feature when people ask how you are doing!
Although I regret spewing it all over him in that kind of scenario, it opened a door for us to communicate about this area of our lives. This kind of conversation is hard to have with your spouse, but I have learned it is much harder if you do not have these conversations.
I don’t have the answer for every couple as that is a personal area, but Jimmy and I finally came to the conclusion that what we both were desperate for was intimacy. As a female paraplegic, I was physically able for my husband to have sex with me (although many people thought that we could not and were mourning for Jimmy — that made me mad!), but the lack of connection with my paralyzed body also brought a disconnection with my emotions.
Years 2 & 3 were years of adjustment for us sexually. We realized that in many ways we were like newlyweds again having to discover what works and what doesn’t. Although many things are different (my body, abilities, sensations, self-image, energy, pain levels, spasms), other things have not changed. We could not focus on how things had been, we could only focus on how things were going to be from now on.
Since Jimmy had felt like we were in a good place sexually because his needs were being met, we had to focus on what was frustrating me. Paralysis changes nerve sensations and things that used to feel good can feel horrible, or non-existent. However, there were new things that were to be discovered that never worked before and now brought pleasure. Jimmy had to learn to be sensitive to my emotions as it doesn’t take much to flash you into the past and be upsetting, and he had to learn to listen to what my body was saying to me and he had to follow my directions. We learned to see this time of adjustment as a disability problem, not a relational one.
There are times that I have sex with Jimmy when my body is screaming no. I do it because I love him and I know that he physically needs me at that time. There are times we do not have sex when Jimmy’s body is screaming yes. He does that because he knows that it would pain me too much and he loves me more than himself. This is intimacy.
Jimmy and I are far from perfect in our marriage and in our sex life. However, this imperfection is the exact place where we know this is bigger than us and so we cling to God. We need His help every day to help us be the couple He desires us to be. We are a work in progress and we will still be when we are married 50 years. We love being married to each other and are committed that we are going to keep fighting for what we love.
Statistics show that marriages with disabilities have a very small percentage of making it. Being disabled has added a whole new layer of struggles in our marriage, but we don’t want to be a statistic. We would like to help change that trend and say that all marriages are worth fighting for. If our story helps to encourage other couples to stay committed in their marriages, then it is all worth it.
I get that you may be frustrated in your sex life. Don’t settle. True love can conquer all – even paralysis. If you are going to fight, then fight for that love.
I am Alicia Reagan — a Christian, a wife, a mommy and a paraplegic. No that ins’t a disease — it means that I am paralyzed. I use a wheelchair full-time and that keeps my life as a Christian, a wife and a mommy very interesting and exciting. I talk about all of these things at aliciareagan.wordpress.com. I love writing, and my blog is a combination of everything I am, who I am becoming, and what I think about enjoying the ride of life. I hope you will enjoy this journey with me.
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