President’s Column

I take thee to be my wedded wife, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part….

Many of us say this vow in our wedding ceremony. I don’t know what you were thinking. I can tell you what I wasn’t thinking!

What does that mean for me if she becomes paralyzed from the waist down? What does it mean for my life if she develops such horrible nerve pain that she can’t handle me touching her anywhere below her waist … even if our legs inadvertently touch in the middle of the night? How am I going to handle her having such horrible fatigue that she can barely function? How am I going to handle it when she loses bowel and bladder function? What is going to happen to my life when I am with someone who is experiencing such virulent depression that none of the medications or therapy work effectively? What is going to happen to our relationship when our beautiful lovemaking becomes so physically and psychologically complicated and difficult?

I have no doubt that if I had been considering any of what was going to become our reality that I might have danced the hora with a bit less wild abandonment.

The caregiving relationships that develop in families are incredibly complicated. Each culture defines all the acceptable and expected behaviors that exist in our families. These behaviors and expectations are defined between parents and children, between siblings and between partners. When a child or a sibling or a partner is diagnosed with a very complicated and rare disorder that comes with challenging, and often difficult symptoms to treat, all these relationships are dramatically changed.

Over the past thirty years, I’ve observed all the most positive and uplifting reactions, all the most devastating and destructive reactions, and everything in between. It is always a challenge for these most important relationships in our lives. Even for those who manage caregiving in the healthiest of ways, we can lose patience, we get tired, we can become resentful, we can become discouraged. For all the triumphs and accomplishments, it is hard to ignore that these disorders involve some profound losses, and those eventualities are just incredibly sad. Some people manage these situations with courage and grace; some do not. That goes for those who have the disorders and for those who become caregivers. In all cases, I’m not going to put a smiley face on the process. It is tough stuff.

There are some wonderful stories that demonstrate the great resilience and strength of the human spirit. There are stories filled with tragedy and heartbreak. From years of experience, I have learned not to judge how people react to or manage (or fail to manage) these difficult life experiences. No one gets any great training to be a caregiver.

Caregiving is an acquired skill. The skill involves the physical activities, and the psychological and emotional activities. One learns as they go. Some learn to do it well. Some don’t. Some have no interest in being a caregiver. At the age that most people get married, they still believe they’re immortal and no one is getting sick; at least not before the honeymoon.

Pauline was an incredibly independent and proud person. She excelled in school as a student. She had a BA and MA in elementary education and had all the credit hours towards her PhD. She was an exceptional kindergarten and elementary school teacher. She was very close to and adored by everyone in her family and had wonderful friendships. She had hobbies that she loved, and she was a voracious reader. When Pauline and I fell in love and started our relationship, we were both seeking a union of equality. Pauline’s independence and our relationship of equality got dumped on its proverbial head in July 1994.

Neither of us were prepared for how our lives were going to change. Pauline was in an acute care hospital for a week and then spent two months in a rehabilitation hospital. When she came home, our roles as co-equal partners were challenged in the most dramatic ways. I could write a dissertation about all the physical challenges we faced, involving every manner of bodily function. Caregiving involves so much more than the physical stuff. There is also all of the organizational and logistics activities. Planning a trip to visit her family on the farm involved lots of planning and packing. So much stuff to pack. Planning a vacation involved another level of activity. Surprises are generally not a good thing. Another critical aspect of caregiving involves advocacy. I became a strong advocate for Pauline in so many different aspects of her life.

Almost inherent in the notion of caregiving is dependence. While Pauline always appreciated my support, she was never comfortable feeling dependent. She, in fact, railed against the idea that she was dependent on me. Pauline thought of herself more as my supervisor than as depending on my help. For so many different reasons, this caregiving dynamic was never comfortable for either of us. But it was also an unavoidable reality of our relationship.

Each of us involved in establishing the organization came into this experience with our own set of caregiving situations. Parents caring for a very young child who was diagnosed. Parents of a young teen. A parent caring for an adult child. And husbands who were caregivers for wives. Each of these situations was unique … they are all unique and based on the individuals and the severity of symptoms. What existed in each situation was a tremendous amount of love, compassion, and empathy. What was also present in each of our cases was an ongoing and intense fight for independence.

I once had a conversation with Jim and asked him why he was using the sip and puff technique with Morse code to communicate on his computer when it would be so much easier for him to use his voice to dictate the typing and computer commands. Jim has been a full quad and vent dependent for decades. He has someone within reach of his ventilator 24 hours a day, 7 days a week. He explained to me that the only privacy he ever gets is being able to have conversations with people without his caregivers hearing everything he is saying. The fight for independence came in many forms but existed in the most compelling ways for all of those involved from the beginning of our organization. Debbie, Paula and Pauline all were diagnosed with TM, and they all worked.

When we began the TMA, there was no conscious effort to form an organizational culture. It just happened by virtue of our personalities and values. Tikkun olam, to heal the world, has always been a central value for me. And without identifying it or giving it a name, it was a fundamental value for Pauline, Jim, Debbie and Paula, as well. Also, our caregiving experiences, both as giver and recipient, informed our work and our mission.

Whether offering support on the phone or at support group meetings, or educating our community through our publications, our website or symposia, our values and our culture permeated all of our work. It became who we are. As people become members of our organization, either as our staff or volunteers, our culture and values are clear. We genuinely care about and for our community and each other. Care is and has always been central to who we are.

Being Pauline’s partner and her caregiver was never entirely comfortable for either of us. Our relationship was far from perfect. I was also very much aware that I irritated the crap out of Pauline. In fact, I was never quite certain where I was with Pauline in regard to just how irritated she was with me. I periodically received scoldings when she’d reached her limit… and while I am a pretty introspective, analytical and reflective person, I was never quite clear of my proximity to that proverbial cliff.

When I wrote my book, I asked Pauline to write the conclusion. I told her that I would never have done any of this work if not for her. So much of this experience for me was Pauline’s story … Pauline’s and my story. I wanted her to have the last words of the book. She put off the writing because she was concerned that she would not be able to find the right words. Just before we were to go on a vacation to Montana, Pauline handed me her conclusion. I read it and told her that I would not change a word; it was perfect.

The following is a short excerpt from her conclusion:

It has been 23 years since my old life ended and my new life began after my transverse myelitis attack. Sandy has described many of the experiences I, we, have had over these years and included in this book, the firsthand accounts of personal stories people have shared. There are many thoughts and feelings that have stayed with me through this experience and that I believe to be true. … I believe I was meant to get TM so that Sandy could help me and all who suffer from these rare neuro-immune diseases. Sandy has the intelligence, confidence and extraordinary character and passion that made it possible to make and build the TMA and make it the family it is today. One would need only meet Sandy to see he is a genuine and quality person. His inspiration touches your heart and makes you want to be a better person. Sandy believes in people and knows the greatness in each person. Everybody needs someone to believe in them, everybody needs a Sandy. I am blessed to have mine.

And because life can be a tragic cataclysmic storm, Pauline died while we were in Montana just a few weeks after she handed me these words. I will cherish them until the day I die or no longer remember who I am.

So, we did the caregiver thing well enough. Pauline hated my guts and found me entirely irritating only part of the time. We loved each other deeply and cared for each other passionately, and we helped to infuse the work we did for this organization and for our community with this very same care.

Please take care of yourself and each other.
Sandy