Letter from a friend

My Dear Friend,

I think about death, a lot.  Not in a morbid way, nor because I believe I am dying; rather because I ponder my life and what it has in store for me.  Thirty-two years of living with the unpredictable manifestations of Multiple Sclerosis leads to constant conjecture as to how my body will react to its environment.  To date I consider myself lucky to be only moderately affected by this shit disease. My thoughts regarding the volatility of one’s health have been heightened by my step-father’s latest visit to the hospital. He is a double lung transplant recipient with no immune system whose slightest exposure to any virus results in a death spiral he then stubbornly fights to reverse.  Each bout leaves him weaker and weaker until only a semblance remains of the man he once was.

I ask myself why someone would want to live at any cost.  The physical, emotional and financial toll that comes with catastrophic illness is all encompassing.  I am certain that I do not want to subject myself or my family to anything of the sort.  Throughout his illness my mother has dutifully remained by her husband’s side, albeit at times, begrudgingly. Is this extra time alive a burden or a gift?  For the affected person?  For the family?  For the healthcare system that racks up millions of dollars in charges?

While I am nowhere near requiring that level of care I am fully cognizant of the impact my illness has had on my family.  For the past several years I have been increasingly dependent on help from others; to drive me places, to reach a top shelf, on bad days to help put on my shoes.  My entire life I have been fiercely independent, almost to a fault.  Choosing to hide my disease and any weakness that resulted until it was impossible to do so any longer.

It’s funny, this blog is like a coming out party.  Announcing to the world “Hey! I have MS!”  I imagine as most coming out stories it is quite anticlimactic since everyone already knew or at the very least had a strong suspicion.

Now that it’s out there and my new reality is one of being dependent on others, I am having to learn a new role.  One that entails asking for and receiving much help.  I am having to grapple with my feelings of inadequacy and weakness.  As a wife and a mother, I always hoped I would be the caregiver. Quick to solve problems, take kids to the doctor, cook a terrific meal and anything else that popped up.  It’s ironic to find yourself on the opposing spectrum of that scenario.  But it’s not the role reversal that bothers me.  It is the fear that my incessant need for help will make my family resentful of me.  As I write these words I fully realize that this is my and only my neurosis, however, it is still a deep-seated fear. If I am to be truthful with myself, these thoughts are not only damaging but somewhat self-centered and unfair to those who love me.

So how do I become more gracious?  How do I not only willingly accept help, but also learn to ask for it?  It is my hope that in spending some time contemplating this I can better come to terms with my limitations but more importantly redefine the gifts and talents that I know I still have.  In receiving it is important to acknowledge the gift the others are giving you.  I will try hard to be worthy of those gifts.

Sophia