“One foot, other foot,/One foot, other foot,/Now you can go/Wherever you want…”  Those lyrics from the Rodgers and Hammerstein musical Allegro often come into my head as I am helping my husband walk.  My husband Vince has a genetic disorder called Fragile X-Associated Tremor Ataxia Syndrome (FXTAS) which, over the past five years, has been robbing him of his ability to walk and think. 

FXTAS was identified by researchers only a few years ago (we spent five years and visited five neurologists before we got the diagnosis).  Appearing in some grandfathers of children with Fragile-X mental retardation, FXTAS clogs up the brain with a nasty protein that interferes with coordination and thought processes.  Vince’s legs work, but his brain can’t tell them what to do; he can walk a little if I hold onto him and give him verbal prompts like “Pick up your feet….one foot, other foot.” 

I became Vince’s full-time caregiver in February 2004 because he was falling too much to be left alone.  At that time, we’d only been married for five years (Vince’s first symptoms appeared a month after our wedding!) – it was a second marriage for us both.  So as I adjusted to a new marriage, I suddenly had my husband’s illness thrust on me, as well as all of his very complicated business affairs and his very neglected house which needed practically everything repaired or redone.  Vince’s FXTAS has affected his brain in that he cannot handle finances or anything else that requires planning or execution, i.e., all of life’s chores.  He is also very difficult to communicate with – logic and the ability to express complete thoughts are no longer present in this man who is a Ph.D. laser scientist.

Needless to say, I have struggled mightily in the past year and will continue to do so, as there is no cure for FXTAS and very little is known about it at this point.  Every day is a challenge as I get Vince from place to place around the house by a combination of walker, stair lift, and holding onto him with a gait belt as I tell him how to balance his body and move his feet.  I am also the physical therapist – we had some sessions with a therapist who taught me how to take Vince through simple exercises that will hopefully keep some strength in his muscles.   It’s important to keep him moving as much as possible, which is not much at all – we usually don’t even get around to all his exercises every day because he tires so easily.

One aspect of FXTAS is that Vince often gets completely “stuck” – he won’t be able to move or to respond to my verbal coaching.  So I wait…and wait…and wait…and pray…and pray…and pray that he will start moving again.  He eventually does get moving again, but we spend a considerable amount of time every day just being stuck.  Sometimes he gets “stuck” sitting in the shower, not knowing what to do first; sometimes he gets “stuck” trying to get up from a chair; sometimes he gets “stuck” in the middle of walking – at those times I need to be able to hold him up until he gets unstuck.  I try to never be far from something I can sit him down on if he stops moving and my strength to hold him up gives out. 

Throughout the past year of full-time caregiving, I have also become “stuck” many times.  I get extremely overwhelmed by the physical demands on me, in addition to all the health care and financial complexities I must deal with and the lack of a real marriage relationship with a sharing partner.  I can’t look forward to things getting better, because all the doctors say it will only get worse.  I often become mentally paralyzed with grief, fear, anger and frustration to the point that I feel I cannot go on.  I sometimes feel I can’t stand one more excruciatingly painful and boring day of this life.  I try desperately to find meaning in a marriage in which there is only an occasional emotional connection between my husband and me.

But so far I have survived – as has Vince – and I will continue to get by, but only with the grace and help of God.  Without my faith there is no way I could do this life!  I have learned that when I do get stuck, I need to stop, drop and pray for help.  I ask for patience, endurance, courage, and help getting through the difficulty of the moment.  After a while, I find that I can get moving again.  My mind calms down and I take the next small step – doing the dishes, laundry, paying bills – whatever God directs me to do.  If I can start doing one thing, I get unstuck and can then go on – at least until the next crisis point. 

When I think I just can’t do this anymore, I look back over the past year and realize that I have done it and that God has carried me over all the rough spots that I felt I could not surmount.  Like Vince, I just need to put one foot in front of the other, and start walking.  As the song from Allegro says: “You felt yourself falling/And you put one foot out to save yourself,/And you didn’t fall!…/Say! Maybe if you keep taking steps,/One after the other/One after the other…/Maybe going forward is easier than standing still!”

So, as I say “one foot, other foot,” to Vince, God is also saying those words to me.

Terri Corcoran lives in Falls Church, VA.  She and her husband formerly organized an annual international conference of laser scientists and published a theater/arts magazine in Washington D.C.

 Subscribe to our weekly e-newsletter