Life with MS

What would you do if a family member suddenly disappeared? A woman was sitting a couple of seats away from me. Her face was unfamiliar, and I felt confused by it. Slightly younger than me, nearing 40, she seemed to be completely at ease. Wrapped in a cable-knit wool sweater, she was comfortably fixated on an object in the distance, unaware that I had been drawn in by her face. My eyes followed the firm curve of her smooth cheekbones and bright gentleness of her eyes. I was torn between the comfort I felt sitting near her and the awkwardness of staring, hoping to avoid her detection.
 
Quickly standing and walking away would expose that I had no original purpose for sitting there in the first place. Yet, how could I walk away? Deep inside, I somehow knew that she was my wife, Terri. (From Facing the Cognitive Challenges of Multiple Sclerosis, 2^nd Edition)
 
I don’t know about others who have been diagnosed with multiple sclerosis, but having difficulties with facial recognition wasn’t noted in the introductory MS brochure. Not even a hint. I quickly learned that while MS may be different for each person, there are many common symptoms and a few unspoken challenges. Perhaps like a white elephant gift exchange, receiving the diagnosis of MS includes unwanted surprises. With MS, however, there is no re-gifting.
 
Share, don’t conceal
 
It seems that everyone knows someone who has MS, especially since there are millions of people diagnosed worldwide with this chronic and progressive disease. It is estimated that 65 percent of this population will face cognitive dysfunction. It affects memory, attention and concentration, information processing, visual perception, and word-finding. For me, delayed recognition randomly occurs while driving home, following instructions, trying to remember why I walked into a room, struggling to follow a conversation, or finishing a sentence. Without warning, while we were sitting on the couch at home, I was stunned by my loss of presence. It was a new and disturbing MS dysfunction for me -- the inability to instantly recognize my wife.
 
My treating neuro-psychologist confirmed that the hitch in my taken-for-granted recognition of family members and friends was another example of an MS cognitive disruption. Great, another MS gift. Not fair, but I had to deal with it and not waste energy on denial. The doctor’s message was simple. She told me that a small portion of those with MS may encounter challenges with facial recognition.
 
The discussion shifted to how I should share this information with those who are close to me and the reasons not to conceal it. Strategies for successfully coping with recognition difficulties may be found through open discussion, before and after it occurs. It is difficult to deal with an MS obstacle if no one is discussing it, and it certainly won’t go away by ignoring it. Perhaps like other MS mental obstructions, impaired facial recognition needs to come out of the closet for MSers and their treating medical professionals.
 
The “for better or worse” vow is kind of vague, but I doubt that my wife imagined that the “worse” part might include my difficulty remembering her appearance. Keep it buried and you may find yourself second-guessing the usual morning good-bye kiss, and becoming suddenly uncertain of who is on the other end of it. I know my wife and children, but I’ve caught myself hesitating, waiting for the casual recognition to click. I’ve learned to not challenge the lapses. Fortunately, they quickly vanish, unless I prolong the disorienting moment by dwelling on it. If I challenge the instinct to go on with life, then I become more of a bystander, not wanting to do or say anything wrong.
 
If this sort of recognition delay occurs to you and you are wondering whether to share the concern with the other person, then perhaps ask yourself this simple question: Would you want to know if the other person was dealing with recognition difficulties, so you could be supportive and work through it together? Or would you want her/him to keep it private and deal with it alone? Expose the double standard in your thinking and realize that not openly dealing with recognition delays does not protect anyone from this MS impediment. The truth for me was that if the situation was reversed, I would insist on knowing what was happening. No one solely owns an MS challenge, especially when it affects others.
 
Handling Recognition Loss
 
Here are a few details that I am glad to share regarding how we handle my impaired facial recognition:

1. Know your recognition limits and understand that recognition loss is unpredictable. Don’t waste mental energy by concerning yourself with what “might” happen next, since it may not.
2. Seek a professional opinion from a neuro-psychologist who can confirm the impairment and MS link.
3. Talk ahead of time to close family and friends, so they will understand your need for a “minute” to sort out your thoughts. The pause may also relieve unnecessary pressure to struggle for a connection.
4. Also, tell the people you care about, and who care about you, that you are having difficulties in thinking and focusing so that they can understand and support you. Before grasping at cognitive disconnections, seek out a “safety person,” backing you up during those confounded MS mental moments, so you are better able to hold strong to your vitality.
5. Remember that if this is part of your MS, then give significant others permission to softly remind you of the moment and give them a hug for caring.
6. Laughter brings people together and is a survival path through MS. Use it often and perhaps learn to laugh first and enjoy your life. If you intentionally didn’t want to remember someone, feel free make it clear that you would let them know it.
7. See your doctors and therapists regularly to discuss the effectiveness of your therapies and whether any changes are needed.

Take solace in knowing that nothing has been lost, but with patience, new routes to familiarity may be learned. By accepting that you may be enduring MS thinking difficulties, you will better understand the challenges, leading to successful coping techniques and not surrendering to them. Whatever path you chose for yourself, always include time for those extra hugs. It will reinforce a relationship and buy you a few seconds more to gather your thoughts.
 
A win-win, despite MS.

Jeffrey N. Gingold is the internationally acclaimed author of the award-winning book, Facing the Cognitive Challenges of Multiple Sclerosis, as well as Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis.