Two years ago, I married the man with the prettiest blue eyes I could find. He’s smart. He’s funny. He’s sweet. He’s handsome. And he gets me.
He does all of this, from a wheelchair. When Michael was 17 years old he broke his neck in a gymnastics accident. He’s a C5/6 quadriplegic, paralyzed from the chest down, with limited use of his arms and hands.
I am not sure just how much my perspective as a wife of a man with a spinal cord injury varies from the wife of any other man, because this is all I have ever known, but here goes.
There is certainly a lot to get used to. Not everyone will agree with this assessment, but to me, as we were settling into that first year of marriage, it sort of felt like we had a third person along for the ride.
That third person being my husband’s disability: the special needs it has, the equipment it requires, and the patience and effort required on my part to accommodate it. The catch was, unlike an actual person, the disability doesn’t communicate. You can’t reason with it. You can’t compromise. You can’t take turns. You just have to move out of the way when it is going a certain way. When it slows you down, you just have to slow down. When it goes haywire and changes your plans because of a bodily or equipment malfunction, you have to go with its flow. It doesn’t care if you are sick, or tired, or need a break. It must be handled first thing in the morning, last thing at night, and whenever it wants. It often cannot be “prioritized” or manipulated.
This was a major adjustment, especially for a control freak like myself. Because with other situations in life, you can plan ahead, you can work harder, think faster, be smarter, and get your way.
Being the wife of someone with a spinal cord injury can provide you with great perspective. Nothing like waking up every day next to someone who can’t move to make you realize whatever you are dreading or are afraid of that particular day, doesn’t really matter. But, if you’re not careful, that “perspective” can make you feel like you don’t matter.
I learned, not so quickly, but eventually, to not take the third person “personally.” It took time. And lots of love from a husband who was not willing to let his disability swallow his wife.
It is so cliché’, but communication really is key. Communication is key in any marriage, but in a marriage where a lot of the physical activity falls on one partner, because of a disability, communication is the glue that holds you together.
Just as it is important for the able bodied, ”caregiving” spouse to make sure all of the needs of the disabled partner are met, it is important for the disabled spouse to make sure the caregiver is taken care of.
There is so much support you can give, even if you have a spinal cord injury. My husband has found dozens of creative solutions to contribute. His legs may not work, but his ears do. He is an excellent listener.
There have been times when I have felt third in line in this marriage, behind him and his disability. Because he was able to see me, and hear my perspective, he was able to change it. To make me realize that we are a TEAM. There’s nothing either of us did to deserve this. It’s not anyone’s fault. But neither one of us is in this alone. We are on the same team.
Being part of a team is empowering. When you are weak, the other is strong. Two heads are better than one. Another cliché, but all of that is true. And when you’re dealing with a hard-headed non-compromising wildcard of a third person, you need as much power on your team as you can get.
My husband and I write a candid blog about our life called “Love Like This Life.” We write about life, love, faith, work and disability. We put ourselves out there in the hope that we will connect with others and encourage them along the way. Come rock this out right along side us!
Great article. I think that your insight is amazing. Keep up the good work.
I was really inspired with the the GREAT LOVE U2 have for each other. It is hard to have a disability and having people who don’t understand it. PEACE BE WITH U2 FOR YOUR LOVE FOR EACH OTHER <3
Thanks for sharing this Dana! My perspectives as a wife of a quad are very similar as we have shared with one another and found out. I am so proud of you getting the word out, and sharing your heart. Keep up the good work. I love you. P.S. I TOTALLY agree about the communication thing. hugs – mb
My husband and I were married two months when his injury happened
We were our horse back riding he got thrown off twisted his neck and couldn’t move instantly
He had swelling on his spine from c2-c7 they shaved out the bones to relive the swelling on the hemi cord lession
He was parallized for 1.5 weeks wore a neck brace for 3 months
And had to live in hospital for 1 month in a half .
He has nerve pain on left side of body and spasticity and pain on right side
It’s been a year and he’s mentally deteriorating
Till death do us part!!!
I need help handling this please help
Story made me sad.. ima T-9 of 8 years been married 5 years i would rather not be married if my wife felt like that
i am disable gay .even my parents stigmataized me high moral stupidity is coming to me what shall i do my age is 25 and it is from rural area at Ethiopia
Living with the results of spinal cord injury is just about the most difficult thing I can imagine, mentally and physically. Those who survive and get on with their lives have every reason to be proud of themselves as they learn the true meaning of words like “love”, determination, perseverance, and accomplishment. I believe that when all is said and done, the experience actually enriches one’s life. I say this as a T4-5 “complete” paraplegic for 39 years, caused by a fall when I was 26 years old. I think it has helped me to look at all the difficulties as challenges to be overcome. However, everyone is different. I have sympathy, empathy, and the best wishes for everyone.
Our daughter was 6 months old when my husband fell from a tree and disclocated his C5. Thank you for writing this. We are now 10 months into finding our new normal but you’re words are helping me find “perspective”. Bless you
My husband was in a work injury February 17,2017. We had just got married September 3,2016 and been together now for a total 14 years. We have a 9 year old daughter. I can say it is getting harder because my husband is not a good communicator but he did one day open up to me and tell me he feel like we are roommates now and feel like I’m always gone. I’ve always had issues with him being gone every weekend and not spending time with me and his daughter and so now we are seeing how we both use to feel. I’m struggling trying to be a great wife, mother, keep up on my health physically, work full time, and stay involved with church activities. I’m beginning to feel overwhelmed and less of a person. I want my marriage to work but it’s getting hard and I feel like I’m getting tired of putting in the effort and it not being good enough. Then there is no effort being put in on his half…thanks for sharing this article. Like to see those who understands
I am a c5 – 6, Sci male age 35 now been married for 11 years now. My wife has been very supportive and I feel am in a much more better state mentally because of the support she has given me. We are like the couple every one looks up to. It is not all shiny in the marriage. My wife has now been found with depression and this has made things even more difficult. She has a high sex drive but I can’t satisfy her and I feel this also makes her condition even worse off. I fail to get intimate with her as I feel the natural part of intimacy has gone because I have to put in so much work to please her, but never get it right. I see there frustration in her eyes. We have tried toys but the gap is just there. Now she got a girl friend and they have sex constantly. I feel left out but I feel she is doing that to avoid getting in bed with another man cause that might kill me. I still feel left out. Everyday I wake up with a thought of knowing I can not satisfy or please my wife. I don’t feel I can compete with any may and that just eats me. We look so good and happy around everyone but in the house we barely even talk. Always on our phones try and get intimate every 4 to 5 months. She is still a very good wife and everything she expected to do very well. But this whole situation is very difficult. Reading through the comments I realise we are not the only ones going through such but it is very difficult. [email protected]
I absolutely despise the phrasing “the new normal!” Nothing about living with spinal cord injury is normal! You actually need a prescription to take a pee. You can’t take more pees (get additional catheters) without getting a different prescription. You can’t go to parties because you can’t get into people’s houses. You can’t fly unless you can transfer. Traveling is a freaking nightmare! Normal? Not at all!!
Well, its a good thing you are not paralyzed. You’d either give up or bail out of the life of whomever you know with a SCI.
Spinal cord injury are common.Spinal cord injury results when a crack in the strong outer layer of cartilage allows some of the softer inner cartilage to squeeze out of the disk.Thanks for sharing information about spinal cord injury .
I honestly respect the original article and am so pleased for the couple that they are happy and I respect all the comments from everyone else, we are all different and so will be affected differntly. My story:
We met when my husband was 24 and have been together 30 years, in May he fell from a ladder from our bedroom window he broke his neck (C1) but thankfully it didn’t kill him, he broke T4 and T5 and L11. He had head trauma and broke 8 ribs. He had blacked out whilst on the ladder and fell down.
We are now 5 months along, the fact that he can’t walk and doesn’t have any control over his trunk is serious but what most people are not aware of his that he also doesn’t know when he needs to pass urine, empty his bowel, he is prone to skin sores as the skin becomes thiner, his blood pressure is constantly low and he is prone to infections.
He has had one serious infection after the other (practically every other week recently) and is currently in intensive care because each time he gets an infection his heart rate spikes, his blood pressure drops and he has a high temperature and flu like symptoms.
I love him more now than I have ever loved him, its not pity I cannot explain it but I love him so much I think it is because he has been so brave and strong and I love that.
I am 100% supportive in his rehab and dearly want him to come home. However, The reality check is that our dream house that we bought, renovated together (carrying bricks and plaster out from the house, basically labouring) and spent all our savings on so that we could live our dream of a cottage in the country side, will not support his needs. He will be unable to have a shower or bath and will only be able to wash by the sink (he loves being clean), we are not sure if he can get from the bathroom to the front living room in his wheelchair as the passage is very narrow (he may have to go out the front door and then in the back door to get to the bathroom) and he will not be able to get upstairs because our cottage is quirky and the stairs are an awkward shape.
We are having a constant battle getting support from the local Adult Care Services, even to get an Occupational Therapist let alone get any support for specialist equipment is a daily grind phoning them and emailing them to get support.
The hospital he is in is good in many ways but in other ways not great, to lose weight he has been told each smaller portions! The food is poor and does not meet the needs of a Spinal Injury Patient. The hospital do not act quick enough when he gets infections and hence this is why the infections get really serious.
Did you know that in the UK there is no quota that builders have to meet in regards to the provision of disabled housing, there is affordable housing but not disabled. Trying to move into a home specifically designed to assist a wheelchair disabled person does not exist, why not?
We have a mortgage, he would love to go back to work when he is well enough but having to do bowel management in the morning, and catheterise himself during the working day will make it very difficult for him to work. I am four years away from retirement age.
The crux of all of this is that our lives have been thrown upside down, our love will keep us strong but lets not sugar coat this, every day is challenging. Different societies have contacted us offering support but other than a volunteer visiting my husband I am not sure what they can do to help, to be honest. It could be that my head is always full of worry and anxiety and I am constantly running around trying to make things as good for my husband as I can that perhaps they can help and I can’t see it?
My husband said he would have rather died than live as he is. He feels bad for others who are helping him daily. I reassure him again and again that we love him and will do anything and everything to help. I reassure him daily that I would rather have him as he is than not at all but it is not easy, it takes love, strength and positivity that maybe one day he may get feeling back again.
Be safe, take care, wishing you all the very best.
You are not alone! We have a special support group on Facebook where family and injured alike are talking about the topics you mentioned and a whole lot more. It’s called, “You Are Not Alone Dealing With Spinal Cord Injury.” Who knows – you may be able to support someone just like you – in their time of need as well. To join – click this link. http://www.facebook.com/groups/FacingDisability/
It is a private group – so nobody else will see what you’re discussing except those who are in the group.
Hope to see you there!
I can very much relate to your story. Thank you for sharing. ? I hope the best for you and your husband. We are just one year out from injury, and i still feel much the way you do. Take care.
I needed this! thank you
youre on a special journey that provides no map or handbook. I took that journey with my partner of 39 years. He passed away in Aug of 2016. We managed to make a path instead of following one because a rulebook didn’t exist. We flew by the seat of our pants troubleshooting the whole way. it was a labor of love and laughter and patience and boatloads of forgiveness and second chances always living day to day. I feel the most important thing I learned was to live in the moment and soak up the positive feelings that came from a good day, hour or 15 minutes at a time. Realize that they do exist and life is worth living. Im a better person for sharing my life with and learning what im made of. We shared 40 years together that were filled with obstacles health issues and a lot of putting out small fires. We beat the odds by looking forward and getting up after falling down, we were eachothers rock and shelter. We laughed more than we cried.
On Oct 2o,2020 my husband was in the backseat sleeping only to wake up a quadriplegic. Paralyzed from the chest down shattered his C5
This is all so new, so surreal only wanting to wake up from this horrific accident.
I am trying to stay strong and stay positive! This is the hardest thing i have ever had to face in my 56 years of age.
I realize the reality that this is for the rest of our lives.
I don’t know where to get help let alone support any and all suggestion anyone can give me would be well appreciated.
I don’t know what the road ahead has to throw at us. Looking for help to help me cope.
Kimberly Walker Zayas
Start a notebook write everything down. Meds supplies food. put dates and times. Write it all down. You will have it to refer to. Take it step by step.Grab supplies from the hospital each time you visit including sheets and chux. accept help. Join a church.
You can do this. Just go with the flow. Imagine it was reversed, how he would take care of you.(I hope lol) My husband was paralyzed 7 yrs ago on a motorcycle. Im in NY it seems they are more helpful than UK. Good luck youre in my prayers.
The same month i became pregnant with our second child is when my husband was involved in an accident that left him paraplegic. It has never been easy. Its 6 years now and i dont think i can live any longer. I can not put food o the table, i can not pay bills, I can not pay fees for the kids. I have no support no help, I am in Africa and can not see this suffering anymore. I am tired, i am afraid, i feel its better to die.
I would like to talk to someone about how to deal with and or encourage a paraplegic who doesn’t love him self.. we recently reconnect after 40 years. I knew about 20 years ago that he had an accident and was paralyzed. Our connection is definitely still there. What he says he doesn’t want to put anybody through his shit. I tried to tell him I don’t give a crap about his chair. He still the same person I knew in high school. I just don’t know how to help him or for him to see that he’s worthy of being loved. I need help in trying to help him love himself.