Rheumatoid Arthritis Warrior’s Log

I feel as if this topic is a whole blog unto itself.  Anger.  Growing up with an “RA Mom” and then having it myself I feel as if I’m an absolute “expert” when it comes to a topic that I don’t think has enough exposure.  Sure, being diagnosed with a degenerative disease that causes almost daily complications ranging from pain, limitations, the side effects of meds, the regret of not doing something right with your health way back when….as if that would make a difference – getting RA is all in the genes, right?  Well, let’s face it: for the most part, RA flat out sucks for the sufferer.  But what about the immediate circle of support and/or the dependents of the sufferer?  Sometimes, it might suck more.

Take my family for example.  From the outside we appear to have a pretty cozy life.  My parents have been married forty years this July.  My two younger sisters seem happy.  The middle sis, “the super mom”, married her high school sweetheart.  They live what appears to be in domestic bliss with their two and a half year old daughter.  My youngest sis, “the urban chick”, lives with her long-time boyfriend in the city and works an exciting job downtown.  We rarely see her because the idea of coming to the suburbs bores her, but she confesses that coming home (home where she grew up in the house my parents built and still live in) is simply too hard because it is a sad place.  My Dad, at 63 years old, still has to drag himself to a tough, competitive, and ever-less-lucrative sales job each day.  He hopes and prays that he will make it another three years because he needs to keep the firm’s health insurance since even one year without company health care would bankrupt his hard-earned retirement account.  I believe it is the imbalance my sisters and I perceive in the mom-dad dynamic that is the beginning of some of our anger.

My mom was diagnosed just after my youngest sister’s birth.  She was a big, big baby and missed her due date by a week or so because she was so content hanging out in the womb.  My mom’s first rheumatologist theorized that the stress of that pregnancy kicked off my mom’s RA.  My mom contends that she had “issues” that she claims were symptoms from earlier than that.  Whatever the case, I was in third grade, the future “super mom” was in pre-school, and the “urban chick” was a newborn.  Any parent could certainly attest to the handful that age spread represents.  We were that typical Midwestern suburban household: dog, yard of green grass, two-story house, two cars (one a station wagon), and attended church as a family (even though we had to be dragged there kicking and screaming).  My world, without a doubt, was perfectly cozy.  I was also nine years old, so what should I really know of struggle at such a tender, young age?  Then, when I was still so young that a thunder-storm had me grabbing a blanket and a teddy bear to sleep on the hallway floor outside my parents’ bedroom, my Mom “went away.”  I later found out that she had a mental breakdown.  The pressure of not “feeling well” collided with all of the postpartum issues that she had with the first two babies, and she had to be hospitalized.  She had become dysfunctional.  My Dad brought up his parents, and for a while, things were cozy again despite our not having mom around.

My mom’s health continued to deteriorate in 1983.  The doctors didn’t know what was physically wrong with her.  She began the lifestyle she continues today: a wide array of doctor’s appointments each week, daily mega-doses of medications, daytime sleeping, nighttime restlessness, constant veil of sadness-frustration-anger drawn over fogged up eyes, a move away from her faith, and the way too much information provided to her circle of friends’ simple greetings, “how are you?”  Even as a little kid I could see the way her friends really didn’t expect her highly detailed answer to such a simple question that only needed a “fine.”  My mom, somehow unaware of the negative Debbie-downer factor of rambling off how terrible everything was, what specialist she was seeing next, the amount of pills she takes, the way that she has to wear the latest immobilizer, sling, boot – whatever….the answer that no one, even a good friend, really wants to hear on a Sunday morning after a nice mass with a positive message being so quickly obliterated by this Vicodin vampire of personal suffering….well, my mom had a way of always “going there.”  Thus began our (and I speak on behalf of my two sisters, although, my being the oldest, meant that I was the most aware of it) anger.  It wasn’t long after my mom’s diagnosis and subsequent slide into medical misery that family friends suggested my middle sis and I get family counseling.  Why in the world would a 9-10 year old and 6-7 year old need to hit the couch?  Why?  Because we began “acting out”.

I’ve studied a little child psych, as part of my education course work.  I can tell you that a lot of “milestone” parts of a healthy childhood were compromised.  In all, I’ve probably spent as much time “on the couch” with various psychologists, psychiatrists, therapists, counselors, and social workers as I’ve spent conquering four years of college classes.  I was bounced around because I was: intense, depressed, angry, withdrawn, aggressive, and lacking healthy peer relation skills.  I’m not sure how someone who only saw me sitting on the couch got these opinions since they didn’t see me at school (where I was HAPPY to be) and they didn’t hear it from me because I didn’t talk, or when I did, I talked in deliberate circles…mostly out of spite for having to be there as a kid.  Later, when I was paying for the therapy to clean up the therapy that did nothing for me as kid, this attitude was different.

By the way I’ve just typed a little over 1,000 words and my hands are killing me.  But I’ll power on…..
If you are still reading along, let me now mention that this will not go too much longer.  I like to keep things “digestible” and this post is already getting too long.

So, the first effect of my mom’s RA was to introduce anger, frustration, and sadness into our family’s world.  This was in no way, her fault.  She didn’t wake up and say, “Screw this, I’m going to shake it up.” She slipped, very quickly, into a medical existence that made being a mom something that was a part-time job for her.  She showed up when she could, which wasn’t often.  When she did, forget that I just sang a solo…all the attention was on her with the crutch and my friends’ parents asking “what happened?” or “how are you?” and my mom lurching into the long-winded, depressing, negative accounts of her woes.  As a kid, I was embarrassed, jealous, resentful.  As I kid I saw that my mom was sick, had been gone in a hospital where we didn’t have to deal with all the turmoil – the doctors and nurses did; yet, later she was still sick so why were we now burdened by it?  My dad worked longer and harder to pay the bills.  Vacations were fewer and farther between.  My friends went places; we didn’t.  My friends parents were fun to be around; mine was off-putting.  My friends….and so the obvious comparisons ensued and I was an angry kid.  I was not angry at RA; I was angry at my mom who had become her RA.

Shortly after she was, in all reality, an invalid, my dad arranged for a Swedish au pair.  We were under the care of a complete, although nice, stranger.  It is also at this point that my memory fades.  I have been told that because I was so angry, sad, and frustrated that I was unable to allow my brain to function in laying down memory.  I simply recognize this fuzziness as some sort of psychological-wound-dash-coping-mechanism.  I can tell, looking at pictures, that I continued to function.  I played soccer, tennis, and did swimming.  I was a solid student and cared about doing well in school.  I had friends.  I participated in activities.  I was just a not-too-nice big sister.  I wanted my alone time, withdrawing into my own world of reading, writing, and daydreaming.  Tensions between my mom and me were huge and we would have explosive fights.  She, being heavily dosed, would sometimes say some pretty horrible things to me.  I would get grounded to my room.  Since I was so much in the role of adversary, my sis took up the role of ally.  The future “super mom” would mother my youngest sister and tend to my mom who would be crashed out on the sofa.  The Swedish au pair washed our laundry, ran errands to get groceries, and whipped up an ever-original batch of casseroles.  My dad would come home late from work, exhausted, and be swept up into the conversations of what next complicated medical tests and procedures my mom needed to pursue based on some specialist’s suggestion or new complication.

This is how I remember it.  My youngest sister doesn’t remember any of this…she is lucky.  She didn’t have to essentially “mourn the death” of her once healthy, happy, active, and beautiful mom.  The mom of my very early childhood “died” in the mid-80’s.  The woman who still retains that title to this day has never once re-captured the essence of who she used to be.  This “RA Mommy” is something entirely different from the woman my dad married, the woman who gave birth to my sisters and me, to the daughter she was to her distant parents, to the sister she was to my now deceased aunt.  She became the disease.  Once RA figured out the power of its possession, it then invited other friends to join it in my mom’s body…and soon the medical misfits of Osteoporosis, Fibromyalgia, Degenerative Discs, skin disorders, vision and hearing problems, muscle strains and sprains….all took hold too.  With this came the additional and more frequent bouts of mental woes.  Our family suffered.  How could we not?

I know that each and every case of RA is different.  Prior to my diagnosis in 2008 (not a fun day as I recall it), I had traveled the world and seen third world countries’ definitions of “suffering”.  I had practiced meditation and read up on Buddhism’s principles of “suffering”.  I had spent a lot of adult time and my own money in therapy trying to resolve some of the anger that I was still carrying from my childhood “suffering”.

I am always consciously aware that I don’t “suffer” from RA.  I have RA.  I have job, blonde hair, ten fingers and ten toes, and a Jeep.  These are facts….these things are not me.  Being an English teacher, I am very aware of the connotation of words.  I chose these and the words that define me very carefully.  At 1,851 words for this entry now my hands ache.  They would still ache if I wasn’t typing.  I can elect to notice this or not and to give it power over me or not.  I can stop thinking about it as easily as I start to think about what to get my dad for Father’s Day….something of a holy day in our family… a day to honor our saintly father, who has sacrificed so so so much for his family.

I think that I’ve written enough for now.  There is more to be told of this topic.  Other RA-diagnosed people deal with their circumstances differently.  Some hold meds, like me; some medicate but have different “cocktails” of meds that produce widely different results.  Yet, the one thing that might be the same across the board, is that the parents, husbands, wives, daughters, sons, aunts, uncles, co-workers, tennis partners, life-long confidants, book club circles are affected too…RA touches their worlds.  “How are things?” becomes a loaded question and feeling helpless to do much for this person with the hot, swollen joints introduces something awkward into the relationship.  For me, it was mostly anger.  For others, it could be a vast array of other emotions….but emotions that might not otherwise be there because of RA’s complications are now there.  Anyone who knows someone who has this disease, then at some level, knows this.  RA is not merely about those who have it, but those who are bonded to those who have it too.  This is a truth.  This is the focus of my next few posts.