The Waiting Period

Originally, I had decided to stash the potential of an MS diagnosis in  a folder labeled "August 12th," the date of my next neurology appointment. "Why panic?" I asked myself.  "When I don't know for sure yet?" 

Yet, of course, the limbo of waiting for a potentially life-altering diagnosis is, in itself, scary and terrifying. 

In fact, since there is no single test for MS and, by definition, it requires two episodes to be officially diagnosed, almost all people eventually diagnosed with MS go through a waiting period. Fortunately, unlike years ago when people sometimes waited years, often suffering increasingly debilitating attacks before being officially diagnosed, currently there are clear diagnostic standards, the McDonald criteria, that neurologists rely on to make a diagnosis. So, the next step is to wait to see if I have a second attack. It's certainly possible to only have one attack, called Clinically Isolated Syndrome, without ever developing full-blown MS. 

And hence, my dilemma, to what extent do I acknowledge and address an illness that I might not even have? Yet, if I do have it, wouldn't I want to use this time to "prepare"?

As I have grappled with these questions, I was reminded of an anecdote from the feminist therapist and author Harriet Lerner. On a team-building white water rafting trip, Lerner, who was terrified, repeatedly voiced her anxiety until she realized it was not only escalating her own anxiety and interfering with her ability to work with her team, but raising her team's anxieties, too. So, she pulled aside one of her very good friends, and shared exactly how petrified she really was.  She even gave him instructions on what to do and who to contact (her husband and two sons) in case of her death. Once she had addressed her fear and anxiety, Lerner was able to make a conscious decision to tap into her competence during the remainder of the trip and therefore was able to become a fully functioning, skillful member of her team. Brilliant, sanity-saving strategy, indeed!

For my part, during this emotionally and spiritually turbulent time, I have decided to follow Lerner's lead. I have shared with good friends and God, too, exactly how afraid I really am, and, truthfully, also how angry and at times sad I am, and I will continue to do so as necessary. At the same time, I am tapping into my core competence, to handle this potential diagnosis. On a practical level, this has meant copying my house key and giving it to friends, programming my Dr.'s information into my phone, and doing a little bit of reading (but not too much) on MS. As a dear friend, whose daughter suffers from MS, advised me, "Be informed, but not alarmed". 

Additionally, I have made an intention to enjoy my summer--I live in a visually stunning area--a small town surrounded by dark green mountains--and I simply do not want to miss out on all that the summer here has to offer: back yard barbecues, visits to the outdoor pool, summer bike rides, the Farmer's Market, and late summer nights. So, while I wait, I plan to dig into my summer with gusto.