It's interesting how people come into our lives when we least expect it and often it's when we're doing something as basic as grocery shopping, going to an appointment, renting a movie, etc. I believe that people are put in our path in order for us to connect, share and learn from one another. When it happens & you're willing to open yourself up to someone, it can be an amazing experience that changes you and your perspective.
I was blessed to meet an amazing woman today while getting a mammogram, but somehow I never caught her name. We just started talking during the procedure and the floodgates were opened. I was in the most vulnerable position (hard to be modest when you're half dressed) sharing my medical history and the next thing I knew we were having a full on discussion about love, loss and grief. I'm a cancer survivor & her husband passed away from cancer and as we talked the topic of grief came up. Our discussion inspired me to write about this difficult topic and I'm not sure why I didn't do this sooner. I believe that she and I connected for a reason and that reason was for me to write about something that so few of us talk about openly. Grief. What is it? What does it feel like? How do we deal with it?
Grief is a normal process, but sometimes we don't recognize it. For myself, I didn't recognize it, because my husband had not passed away. Why would I be grieving for someone that is still alive? Besides that, I was in complete denial and shock the first year of his injury and I certainly can't leave out anger, sorrow and my personal pity party. These feelings are not wrong, but yet we may feel guilty about feeling them, especially when our spouse is still with us physically. What we fail to realize is that we're grieving for the loss of our future dreams, what we thought our life would be and the loss of our spouse as we knew them before. As someone that has written in journals for years, I didn't write in my journal for one full year after my husband's
injury. Looking back, I think it was because putting it on paper made
it real & I couldn't deal with that yet. I also like to control life, which I now know isn't possible. I put on a brave front that I was strong, didn't need help and proceeded to stuff all those bad feeling inside of myself. How naive I was keeping grief at a distance when it needed to be dealt with.
In order to heal, we must grieve and the timeline is unique for each of us. Someone else you know may seem to be moving through grief at a different speed, but don't compare yourself with anyone else when it comes to grief. I have moved through the grief process quicker than my spouse and of course I want him to hurry up and heal, but it doesn't work that way. His hurts are different than mine, he is reminded of his loss everyday that he gets into his wheelchair and I can't heal those hurts for him. Friends may try to help and their intentions are good, but often they're uninformed and don't know what to do or say, which may lead to being insensitive. Don't let anyone tell you, "You should be over it by now" or "It's not as bad as it seems."
Only you know what you're feeling whether that be: loneliness, fear, blame, rage, anger or guilt. One day you may feel that you're making great progress and then something triggers an emotion that sends you reeling back. As time goes on you're able to work through these emotions and slowly move forward again. I know from experience that even after 6 years I'm sometimes caught off guard by a wave of sadness or "whoa is me" moment. It happens, I allow myself to feel it and then I move on again.
The most important thing I've learned is that talking with someone who "gets it" can be very therapeutic. I struggled with this for years, because in my mind, being vulnerable meant losing control. I've come to realize that I don't have to be the "strong one" all the time. What I have gained from opening up and being vulnerable is the knowledge that I'm not alone in my feelings and that usually the person I'm opening up to needs to hear my story as much I need to hear theirs. This is exactly what I experienced yesterday at my medical appointment. Two women talking openly about grief, acknowledging and understanding one another, being vulnerable and not judging where each of us is in the journey. I'll close with a verse I came across 3 years ago and it resonated deeply within me. Unfortunately, I don't know the author.
"We do not understand:
Joy...until we face sorrow.
Faith...until it is tested.
Peace...until faced with conflict.
Trust...until we are betrayed.
Love...until it is lost.
Hope...until confronted with doubts."
It's ok to grieve the past, it's part of what makes you who you are
today, but don't get stuck there and let it keep you from dreaming again. The wound may always be just below the surface, but it gets to a point where it doesn't overwhelm you anymore and when that happens you'll be able to find hope and dreams again!
Wednesday, January 16, 2013
INTIMACY. What crossed your mind when you read that word? Did you instantly think of intimacy in terms of sex? Did it make you uncomfortable? Is it because ever since your spouse was injured everything has changed? Although many caregivers talk about every topic under the sun in person & on Facebook, it seems that no one wants to bring up this touchy subject (excuse the pun). I hope you'll keep reading & realize that you're not alone in dealing with this uncomfortable topic.
What does intimacy look like to you? For me, it encompasses more than just the sexual act. It means sharing my emotions openly with my spouse, not fearing judgement & also allowing myself to be vulnerable. For others it may mean something completely different, because it depends on your circumstances. A caregiver friend of mine, whose husband has a TBI, once said that intimacy for her is sharing a cup of coffee at the kitchen table in the morning & having a clear (lucid) conversation with her husband. In other words, it depends on your specific circumstances and the type of injury your spouse sustained.
I wanted a varied perspective from caregivers whose husband's have different injuries than my own so I posted a question about intimacy to a caregiver group. The responses opened my eyes to some commonalities as well as differences regarding intimacy after injury. My husband is paralyzed & has limited mobility from the waist down. Figuring out how to be intimate after his injury was an exercise in frustration, humility and patience. It felt awkward to hug him in his wheelchair from a leaning over position. It was the same with kissing or holding hands while walking/rolling, because he needs both hands to push the wheelchair forward. It was extremely difficult to get past "how things used to be" and getting comfortable with one another again didn't happen overnight. One commonality among caregivers is the feeling of being more like a friend/nurse versus a spouse/lover. This is partly due to being together all day, which takes away the "distance makes the heart grow fonder" theory. That in conjunction with taking care of your spouse's personal needs equals a feeling of parenting versus wife. The following are caregiver responses which I edited for length & privacy:
* Intimacy has greatly changed, because his TBI tends to make him more affectionate or he plain ignores me. It depends on his pain & stress level that day. It takes it's toll on us, but we have managed to not let it break us.
* Due to a blast injury that damaged that whole area it's very painful for him to have intercourse. We're very affectionate holding hands, kissing & foreplay, but the actual act we don't do. He hates the fact that he isn't the man he used to be in the bedroom & tries to make up for it.
* Intimacy for us is different than our friends. If you saw my husband & I walking down the street you would think we were friends, because we never touch or kiss in public. He's too 'on guard' for us to have those moments. Our intimate moments happen at home on good days. On bad days intimacy disappears.
* He has a flat affect due to his brain injury & can't form his own opinion so he's like a shell of a person. He has lack of memory so he doesn't truly understand that I'm his wife.
*Newlyweds probably dream of it, but an extended arrangement takes its toll on intimacy. My husband has severe PTSD & there is so much together time that it makes it difficult to transition into intimate time. Especially at the end of the day when he has played games all day & I have worked my tail off all day. It's difficult to feel sexually attracted to a man that behaves like a boy.
*My husband's has a TBI and there's no emotion or too much emotion when it comes to intimacy, but also the forgetting part is so hard! He does love me & adore me, he lives to make me happy...but he forgets & is unaware that he doesn't do anything to show me.
*He has ED (erectile dysfunction) and his "part" has its own agenda. He doesn't feel attracted to me or any beautiful woman, because whatever part of him that is supposed to be attracted just doesn't work anymore. So that's why he doesn't initiate anything: not love, not closeness, not sex. It's a very lonely experience.
I hope that one or more of these responses resonated with you. As caregivers, we need to talk about these difficult emotions with others that "get it" and people we trust. I believe that communication leads to healing. It's easier to suppress our feelings and fears, but it isn't the healthiest option. If you're dealing with a recent injury, please know that there is hope & that intimacy isn't just about the sexual act. You have to decide for yourself what intimacy looks like for your unique situation. So take that time to redefine it and know that it may involve lowering your expectations.
P.S. A special thank you to the ladies that took a leap of courage to share their personal scenarios. It opened my eyes and I hope it did your as well.
For an insightful video from Marshele Waddell Carter on this topic go to: