The world of disability-be prepared, this is long

Those who look at my husband and me see happy faces, a lot of joking, and a couple who is deeply in love-and they are right.  But, what they don’t see beneath the crinkled lines near our aging and all too knowing eyes is the stigma and reality of disability.

Nearly seven years ago, our active lives came to a screeching halt when my husband was injured in a home improvement store on our anniversary. The story is long and painful, but to offer you the abridged version, he got hit by a couple of boards, resulting in a concussion, a stroke on his spinal cord and herniated disks in his neck. So far, he has endured 3 cervical fusions,  resulting in a totally fused cervical spine, allowing him very little mobility, a surgery to implant a permanent pain pump, several cervical denervations and three coronary ablations to control his arrhythmia.

Despite the pain pump, a cocktail of pain medications and compounded pain cream–which he recently became allergic to, he is in chronic and debilitating pain.

I saw it so clearly today. We drove 2 hours to Mt. Calvary to host a weekend visit for parents–something we have enjoyed doing the past four years my son has attended St. Lawrence Seminary. He drove no more than 15 minutes Saturday, on the way up, when I had to take over. The bumpy roads, stops and starts left him in so much pain he had to lay down the minute we arrived on campus.

While we were to host several parent events, I had to do much of it solo as he was in so much pain, he spent most of the day laying down. Now, this is not new–I am accustomed to our limited lives and the increasing levels of suffering he endures; and if anyone believes that a spouse does not suffer along with her husband, they are greatly mistaken. What left me in a puddle of tears, however, was not his inability to visit with other parents, or his inability to play a game of basketball with the kids, or run up and down the stairs–no, it was his inability to pray and sing during Mass that broke my heart.

For those who know my husband, they would tell you that Blaise is the most faith-filled, spirit-led man they know. He can talk to and relate with anyone of any faith and has a relationship with God that I wish I had. He lives by the Holy Spirit moving in his life and he loves to worship. But, as I looked over at him and witnessed him grimacing as he prayed, as he sang–tears rolled down my cheeks, and they refused to stop. He thought I was crying because it was my son’s last year of school-and honestly, there was some of that, but primarily, I was grieving at his loss. At our loss.

So much has changed since this injury–we have spent all of our savings, cashed in IRAs, 401K’s, CDs and sold all the personal possessions we could, to remain in our home in hopes that this personal injury case would be completed.

 But you know what? It doesn’t matter anymore. No settlement, no amount of money will give me my racquet-ball playing, golfing, basketball playing, travel loving, social husband back. He will be forever disabled and forever in pain. Every facet of our lives has changed and I have learned to accept much of it, but when I see his faith wavering because in his mind, he wonders if God doesn’t even want his love–it rips my heart out.

And not that I am important in all of this, but the truth is the smallest most insignificant thing can completely send me into orbit, while things that you would think would be the most certain stress factors sometimes pass by without much effect.  While I have had much time to evaluate why certain days are worse than others,  I realized that it all boils down to my expectations and experiences.  I get the most stressed when my expectations for the task, day, or week don’t line up with reality, such as how I had hoped for a nice weekend visiting with prospective students and their parents, and having a few laughs with my husband and son.  Sometimes that’s because reality can be extremely overwhelming when you’re caring for a disabled spouse.  Yet, I understand that in order to minimize my stress is to reassess my expectations and correct them or evaluate what my control factor is in the situation.

As a wife who has to be the caregiver, I seem to have a much better handle on what has become normal or “routine” in my day rather than stressful.  It’s the new unexpected twists that can set me off, like today when a simple ride home from my son’s school, left him nearly in tears all the way home. I hate seeing my husband in pain. 

 Unfortunately, sometimes small changes can set off an emotional reaction which causes new tensions that haven’t been present in previous situations.   I’ve learned over the years of being a caregiver that getting stressed out over things I have absolutely no control brings me down the most.  Obviously the extreme vulnerabilities of being a caregiver mixed with emotional reactions can make a situation unbearable….regardless of the cause.  Today is one of those days. 

Sometimes it’s being the wage earner in the family and feeling trapped by extreme financial obligations to provide the best care for my spouse possible. For example, unless we get a miracle in the next couple of months, we will be forced from our home, it is as simple as that because in reality, no mortgage company, no bank, no credit card company cares that someone is disabled and has lost their life’s savings to pay medical bills.  

 Sometimes it’s having the lost dreams staring me in the face with an unclear and often frightening view of what the “replacement dreams” might be.  Sometimes it’s feeling like a single parent when “technically” I’m not one. Sometimes it’s wondering why we have lost so many friends and family members because we can no longer do the things we used to do.  Sometimes it’s knowing on a Friday night that the most excitement I can count on is a boring television program and going to sleep at 10:00, which leaves me sitting there feeling like I’m at the end of my life rather than in the middle of it. 

Blaise would say to me to get out and have some fun without him–however, what he doesn’t realize is that nothing is really fun without him. He seems to forget that I married my best friend and for better or worse, he is stuck with me. These are things that I am pondering right now at 4:30 pm on a Sunday as he lays in bed sleeping, just so he can endure an hour or two upright before repeating the pattern. 

I am not sure what the point of this blog is today–other than I guess to think about what was, what is, and hope for better years ahead. The evil one would want me to give up, but I won’t. There are people who have it worse than we do and they have not given up. I pray for less pain for my husband, for many more years together, for the grace to endure whatever it is that is ahead of us, and for all of those who are suffering with pain, illness and disability. God always wins and I just have to be patient with my husband, myself, and God’s timing as I know He will one day, turn all of this to good. 


Thanks for reading. 

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10 thoughts on “The world of disability-be prepared, this is long

  1. Karen
    this brought tears to my eyes. You both have it so rough. You guys are in my continued prayers. Do you know my mom still has impatients growing blooming in her covered window well. I think it is a miracle. And one day a miraclewill happen for you too. The best is andyou said it in your blog. You married your best friend. Not many people can say that.
    love you guys. And thanks for being my friend.

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  2. Dear Karen, I knew bits of this story, but this really helped me grasp the depth of the suffering you have had to endure. My prayers for you are definitely increasing. Thanks for pointing the way to this post today. Hugs, and with a big dose of hope for all that God has in store for you. Without a doubt, you are far from being at the end of the line. May our gentle Mother Mary wrap her arms around you this night, and always.

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  3. Karen, be assured of my prayers for a miracle for you and many grace-filled moments along the way. My father was disabled from a car accident and this makes me wonder what he might suffer today if he were still alive. Your love and courage despite the suffering is witness to your faith. Thankfully, in His kingdom, no suffering goes to waste.

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