My family of origin... now that's what worried me

I didn't know much about MS when diagnosed, but I knew more than I wished to about the destructive potential of chronic illness. It had pretty much destroyed the family I grew up in. My father was the only model I had for coping with illness and his example filled me with foreboding.

My family of origin was like most in the post war era. My father worked and my mother remained at home to raise us kids. My father sold heavy construction equipment for a livelihood and his job required a lot of time on the road. I was seventeen and had just left home for good when he developed Flebitus, a clotting disorder in his lower extremities. Complications led to surgery, surgery to further complications and his overall health plummeted. When he fell ill, he had just left employment with one company intending to join another and consequently was without health insurance. My younger sisters were six and sixteen at the time. Being a WWII veteran, my father did have access to medical care through the VA system. It's believed that his colon was nicked in one of the early operations which led to recurring internal infections. His health went from bad to worse. This began a twelve year downward spiral for the entire family, from a reasonably secure middle class existence to a life of unrelenting stress and financial insecurity. It reduced my father to a depressed, bed ridden invalid. It sapped the vitality and life from my mother. It destined my sisters to growing up in a truly depressing environment. Not a pretty picture.

My reaction to their plight did not suggest I had much of a capacity for facing up to hardship. I had basically fled. I took up residence a thousand miles away and busied myself with the full time pursuits of an angry young man. I had difficulty even thinking about their predicament. My mother, mistaking me for someone with strength of character, would write me long letters regarding the situation at home. I believe she viewed this correspondence as an opportunity to vent her feelings without further burdening those at home. After receiving one or two of these missives I became completely unable to even open them. I kept them stacked, unopened, in my desk drawer. Slowly, over time, I distanced myself further from my family and their sad predicament. I would make an obligatory visit from time to time but I was always anxious to leave. They stopped viewing me as someone capable of offering any real support. As I write this today I think my response was truly cowardly.

There were parallels between my own experience and my fathers , and these similarities worried me. He was eleven years older than my mother and he became ill at about the same age that I contracted MS. For a long time I contended that I was, in most every way, the mirror opposite of him. In truth I knew that I was a lot like him and wondered if I was destined to repeat his unhappy experience. Like twins raised apart, I can almost feel the genetic tug towards personal qualities I associate with him. Admittedly, these attributes are largely inference and guesswork because I know remarkably little about him. Even less about what his internal experience may have been. Even in the better times he kept others at a distance. I have no reason to believe he didn't love me, but he was not a demonstrative guy. My relationship with him began to go south before I entered adolescence, long before he became ill. We grew increasingly estranged as I grew older. I don't know why this happened. He was a difficult man, I was a difficult kid. Time passed and we both stopped trying. I see now, from my perspective as a father, that he should have tried harder.

My father wasn't inclined to volunteer much about himself nor did his demeanor suggest that he welcomed questions. I made up most of what I know based on what I could see. It's odd, the things that have stuck with me. I distinctly recall his shoes. He always wore top of the line Florsheim wingtips, the pebble grain Imperial model. These were bombproof shoes and they apparently had a sizable and loyal following among men like my dad. My dads shoes looked exactly the same when three years old as they had on the day he purchased them. Over the years he'd amassed a sizable collection of Imperials. He had , I believe, all of the colors that the company produced. The older models were identical in every respect to his newest acquisitions. He kept all of his shoes neatly lined up in his closet and he felt it important to shine them periodically even if they'd not gotten recent use. He was by no means a "dandy" but he was fastidious. He wasn't a big spender but when he bought things he appreciated workmanship and quality. His closet generally held no more than two suits, a sport coat, possibly two, and several pairs of dress slacks. I believe he favored the Sansabelt slacks. He appeared to choose his coats and slacks carefully so as to create several possible combinations. He always wore white button down collar dress shirts and asked for heavy starch when they were laundered.

Not much to know about one's father.

My dad and I shared at least one truly self defeating personality attribute. A characteristic almost guaranteed to make any bad situation worse. Maybe I learned it from him, maybe it was just in our genes. When upset by events or circumstances, my dad would retreat into sullenness, self pity really. He'd then punish those around him with an angry, uncommunicative silence. It fell to my mother to puzzle out the nature of his upset and coax him back into the fold. He'd generally hold out a bit longer to insure that the gravity of his upset was fully appreciated and then relent. He adopted this habitual response to his illness, and what had been episodic, became chronic. I don't think he ever recognized that people would eventually tire of this and it made the end of his life very lonely. Had my dad observed this self defeating pattern in another he might have said something I heard him say on other occasions; "that fellow has hoisted himself on his own petard". My dad and I, we're both self hoisters.

I was at my most self centered and drug addled when my mother called me to tell me my father was near the end. She thought I should come to see him. When I got to the hospital I almost didn't recognize him. He appeared to have aged twenty years in the past two. He needed to get to the bathroom but waived off my offer of assistance. He was not one to accept help. He got himself out of bed and tottered unsteadily into the toilet. When he emerged his gown was untied, exposing his backside. It occurred to me that I'd never seen my fathers backside. As he made his way toward the bed a sizable glob of feces fell from the folds of his gown onto the floor. He didn't notice and continued to his bed. I got some toilet paper from the bath and as discreetly as possible cleaned up his accident. He managed to get back into bed and was quickly asleep. I sat by his bedside in tears, thinking that if he could see himself he would surely wish to fling himself from the hospital window. If I could lift him, I thought, we'd both be better off going out the window. I'd come with the vague intention of trying to talk with him about he and I, about what had gone wrong. I didn't.

A month later my mother called to tell me that he had died. I had swallowed a fistful of hallucinogenic mushrooms about a half an hour before she called. There is, of course, no going back when you've ingested hallucinogenic mushrooms. It seems strangely befitting that my response to this news was filtered through twelve horrific hours of twisted, technicolor, grief and shame. Those with an appreciation for poetic justice may wish to slowly shake their heads incredulously. I ask you reader, can you imagine a shabbier personal revelation than this?

My mother, who was a very smart and compassionate woman, once said to me, ."Danny, people are almost always doing the best they can, even when it doesn't appear to make sense". I believe this was true of my father and I think it was true of me. It's ironic, I suppose, that what my father modeled during his illness turned out to be the most important thing he could teach me. I think his example allowed me to avoid repeating the same self defeating behavior and , more importantly, allowed me to avoid inflicting the same on my family. This may be the beginning of significant evolutionary gains on the part of Baker males. My dad teaches me not to shoot myself in the foot and I, hopefully, teach Sam not to drink himself into stupidity. By mid century a Baker boy may be a darn good catch.

I know that bemoaning our distant fathers has become something of a cliche among men of my generation. The truth is that many of us became orphans by our own design. The forests are full of my contemporaries beating on drums and trying to reconnect with the wild man within in lieu of the old man without. Being a cliche doesn't mean it isn't true. I'd give a lot to change what happened between my father and me. Today when I'm perusing the wares at St. Vinnie's I'll often drift over to the shoe rack and if I spot a pair of older Imperials I'll pick them up and admire their workmanship. And unlike most of St. Vinnies shoes, the old Imperials often have a gleaming shine to them. For a time it seemed you could track the demise of my father's generation by the plethora of Imperials on the racks at St. Vinnies. You don't see many these days.

Carroll and I have two children, Janey who's twenty and a sophomore in college, and Sam who's ten and in the fifth grade. The disparity in their ages has made them sort of serial only children. I've had the experience of being a parent before and after MS and it saddens me to acknowledge that Sam has, without question, gotten the short shrift. Janey was such an easy child to parent, such a sweet tempered and compliant child that I believed our laissez-faire approaches to parenting must be quite effective. Sam's arrival acquainted both of us with the truth of the matter.

I don't know exactly what Sam makes of my limitations but he clearly doesn't imbue me with the same omnipotence his older sister did at his age. I worry about our relationship. He is in many ways like me, and our relationship not unlike my own with my father at his age. He is, more often than not, a sweet and loving little boy. But he's not blessed with an easy temperament and he easily surrenders to frustration and anger. When this happens, he's given to saying hurtful and self-defeating things. I, the adult in this relationship, will all to often respond in kind. I know better, I am, in fact intimately acquainted with the consequences of such exchanges. Thus far it doesn't appear that permanent damage has been done. Minutes later, seeming to have forgotten the unfriendly exchange, he'll cuddle up next to me on the couch. It's at these moments that I realize how much I love him, how truly vulnerable he is, how much he needs me, and how utterly blind he is to these things. And, I have doubts about my ability to deliver. I worry about adolescence when the things said are not so easily assuaged. It's unbearable to imagine that Sam could ever feel as estranged from me as I did my father, but it's probable my father would have said the same. I really must do better. If will doesn't suffice, I may have my tongue surgically removed