We really needed the help. When I first read the statistic that disability marriages fail at a rate of 80%, I assumed that was just because one ran away from responsibility. Turns out, it was much more than that. When a major disability enters a marriage, it is like beginning again. You truly become two new people. There isn’t the dating time to work through adjustments, nor is there a honeymoon period, just an instant new way of life.
Two things have given me the opportunity to deeply think about this subject. One is a new book by Ken and Joni Eareckson Tada entitled Joni & Ken: An Untold Love Story ( reviewed below), and the other is my wife so carefully keeping me informed about a tragedy that has struck the lives of Mendy and Jason Brockman. Mendy is in the first weeks of adjusting to paralysis resulting from an auto accident. Since Alicia and I now have 4 years under our belts in disability marriage, we almost relive in horror what these days are like for a couple. Not that I personally knew that couple, I didn’t (Alicia went to college with Mendy); but I know something of the physical, emotional, and even spiritual, roller coaster that they travel at high rates of speed. Every word you hear about them is that they are wonderful Christian people with a beautiful family and an effective ministry. Still, when you have spent your life riding little carousels, roller coasters take your breath away.
Alicia got burdened the other day and began a blog series on her blog (here) I am so glad that Alicia could help in that way! Naturally, I have thought a lot about Jason too. Alicia plans to write a blog post on the caregiver in a disability relationship. I will be interested to hear her perspective on the able-bodied one from the view of the one in the chair. (She plans to consult me and I have given it much thought).
So as I write today I have Ken and Joni with 30 years of marriage with disability on the one hand, and Jason and Mendy Brockman with only days of a disability marriage on the other, to interpret my own with Alicia of 4 years. One couple gives great insight, the other needs it, and Alicia and I stand in the middle both giving and needing. We are progressing, but we have not arrived.
For me to write about disability marriage from my side is awkward on two counts. First, to share my issues may sound like a plea for pity. Though I may be pitiful, I think we are far enough through the crisis that I feel somewhat normal again this year (2013), which I have not since 2009, and really don’t need the pity now. I both got some pity, and needed it, in those earlier days. Second, I am basically a private person, unlike my gregarious wife, and I find discussing failure unpleasant. I am comforted in some measure to learn that the great Ken and Joni, despite a real love, had real rough spots. At the same time I can imagine in some measure what is going on in Jason’s mind right now. Our stories aren’t the same. Joni and Mendy suffered accidents while Alicia got sick over time with transverse myelitis and then woke up paralyzed. Joni and Mendy are both quadriplegics while Alicia is just a paraplegic. In any event, after reading Joni and Ken, I suspect the marriage issues are the same.
I think first how naïve we were not to expect difficulties in our marriage from this disability onslaught. Physical adjustments were apparent on the first day, as were changing roles for each of us individually, but what this would mean to the mysterious union of two people transforming into one never crossed our minds. Ken married Joni knowing of her disability, yet he relates how completely he underestimated all it would mean. Not that it would have mattered at all if I had known either, as Alicia is mine and the one I want then, now, and forever; but the point is there is no way to grasp all a disability will mean.
Complete confusion was part of my issues. Mental chaos led to just trying to survive the day with no thought of bigger things to consider. I had a struggle for a while the first year where Alicia really had a big spiritual breakthrough in dealing with this new life. That is ironic and embarrassing in that she carries by far the greater part of the load with this new life of disability. Then, for a part of last year I had another rough patch. I am glad you don’t know everything I said or did to Alicia then. On occasion Alicia said a few rough things to me too. We worked through and go forward today.
I learned more than ever that the Lord loves me, and I love Him. I learned I really loved my Alicia too. I can be the romantic guy pretty easily, but I had to learn more–I had to learn more how to love her. I had to learn all that was at stake. I suppose every marriage must learn this, but a disability brings on the crash course. A disability won’t let you learn this strolling through the years. It must be now, or fall apart.
I’m supposed to be talking about marriage, but let me digress for a moment. I learned of ugly things inside of me. Had you asked me if I loved the Lord and wanted to serve Him, I would have honestly said “yes.” It was true then, through the rough patches, and now. Still, there was that ugliness. Here I was the preacher, here I was the guy with somewhat a reputation of being a Bible student, here I was the guy who could show you the appropriate passage in Scripture on most subjects, here I was the guy who read all those books, and the entrance of a disability into my life and marriage exposed me. There was a real lack. I have some spiritual wounds to show for it, but it has been a good thing in my life. Christ, I have learned, still knows how to tend the wounds of the guy lying in the ditch on the side of the road. It is strange that he has to break us to put us together, yet that is the reality. A tear on the keyboard speaks to the raw emotion I still feel.
You surely realize that a disability in you or a loved one is not about the disability itself. It is about God molding your life. It is about love, not hate. It is about help, not hurt. It is the Lord confessing for you what you so calmly ignore–that eternity outweighs time like a mountain outweighs a pebble.
I don’t know why God designed marriage like He did. It baffles me really. There’s romantic flutters and domestic pain, there’s the deepest human love you will ever know and some of the worst frustration you will ever feel, all rolled up in that one person called your spouse. It is hard to make this perfect union of two when each one is so imperfect.
I feel like I’m rambling, but maybe this is more to the point than I first imagined. Marriage is not a bed of roses. The Bible would not have had so much to say on the subject were that so. But back to Ken and Joni, and Jason and Mendy, and even Jimmy and Alicia. Disability adds another difficult layer on an already difficult situation. It affects the marriage on every conceivable level. Whether it be defined roles, or priorities, or physical or sexual life, or even just knowing each other, it is different. Really different.
Still, it is worth it. Despite the whirlwind ride this disability brought in my life, I am blessed beyond measure to have Alicia. Her contributions to my life go far, far beyond the deductions. Ken, more or less, said the same thing. Jason will say the same thing too when his roller coaster finally slows down. When he finally can comprehend his losses, he will as both Ken and I have, also be able to tally his gains. And then we can all praise the name of Jesus Christ!
Here is that post by Alicia I mentioned. Hope you will read it. What About The Caregiver
Every couple should read Joni & Ken: An Untold Love Story. It takes us beyond the fairy tale to something tangible marriage can really be. Disability is not the only difficulty that can slap a marriage, so every marriage would be better off to learn from Ken and Joni’s journey. What finally comes is truly a greater love story than the fairy tale could ever be.
This book is not a list of self-help points. You must make your own list. It is just the real story, warts and all, that a real couple faced. That they are well-known adds to the drama, but it is real life you read of here. I simply love it. I applaud their honesty. It took courage, but because of it, it is of far greater value. Thanks Ken and Joni!