MS Affects the Whole Family – Father’s Day Edition

I have many thoughts to share about my recent adventures on crutches, but given that we just celebrated Father’s Day, I am moved to talk about my dad…more specifically, the father I met when I was diagnosed.

I honestly did not spend much time with my father before my diagnosis.  My parents were together, it’s not like I was growing up in a separate home or anything.  He just worked incredibly long hours so he wasn’t able to participate much in my life.  All of that changed the moment I had my first symptoms.  Because of the nature of my first symptoms I could never be alone.  My eyes were rapidly moving from left to right, a symptom called nystagmus which lasted for a month.  As a result my world was constantly spinning so I kept my eyes closed at all times in order to keep from vomiting.  As you can imagine, this meant that I suddenly required a ton of attention which my parents had to balance with attending to my brother who was two years younger.

Just because I needed more attention did not mean my father had to get more involved…but he did.  Suddenly, no matter how important work was, my dad made the time for almost everything that came up.  I am still pretty shocked when I think back to it.  Oh and it goes without saying that taking your daughter around to specialists that aren’t covered by insurance only meant that work was more important than ever before.  I honestly don’t know how he did it, how he somehow made everything happen, and managed to be in four places at once, but he did.

He was there for almost every doctor appointment, from the neurosurgeon at Children’s Hospital to the spinal tap at Kaiser.  It took three months of going around to doctors until I actually received my diagnosis so this wasn’t a short spurt in which he had to balance everything and then he could rest and rejuvenate afterward.  He just kept going, ‘round the clock.  He didn’t hesitate for a second when he saw what it would cost to send my MRI around the world, he just said “do it.”

I myself was in a different world at the time.  While I appreciated all that my family was doing for me, my eyes weren’t fully open yet to what was transpiring.  I was sort of just going through the motions without being aware of the full implications of what was happening. Instead, I was just taking things one day at a time.

Everything came into crisp focus the day I was diagnosed.  Not only did the weight of my diagnosis come into focus but suddenly my eyes were opening up to what was happening around me, to my family.

I can remember the exact moment my image of my father changed.  It was mid-afternoon when I received my diagnosis from Dr. Myers at UCLA.  My parents and I sat in a rather large exam room while Dr. Myers shared the news.  To be honest I didn’t even realize my parents were in the room since Dr. Myers was so in tune to my need to understand my body and now my disease.

I don’t remember much about what happened when we left the doctor’s office and how I got to my next destination.  I remember my mom didn’t speak much but she didn’t shed a tear in front of me (seriously the woman is remarkable).  Somehow my dad orchestrated things in such a way that he was going to take me to lunch and my mom would go home separately.  If the two of them had communicated anything about this plan, I was completely oblivious to it.  Maybe I was still in my world with Dr. Myers…who knows.  

Anyway, my dad and I went out for falafel in Westwood.  Now, I can only imagine what my father was feeling in those moments following the doctor appointment.  I can only imagine how he felt looking across at his twelve year old daughter eating falafel knowing the gravity of the diagnosis I received just minutes before.  Despite what he may have been feeling, he somehow managed to conduct a completely normal conversation with me about anything, everything,else.  He successfully kept me focused on other matters, even when I asked where mom went.

What I learned later is that my mom seized this opportunity alone to grieve.  I know that both of them needed to just sit and sob but someone had to be with me and in some unspoken way, my dad gave my mother this gift.  He gave her permission to feel all that she was feeling and to have the space to let it out.  My father had reached his full potential and had already exhibited all the actions to become my hero from the first day I had symptoms…but it was this crowning moment that finally made me see it.  I’m not sure why I had not fully seen it previously.  Maybe I just thought this was all normal – “normal” for him to have higher bills than ever before and yet suddenly have more time than anyone thought possible, “normal” to be driving hundreds of miles each day just to make sure he could be at each doctor appointment in between job sites (he’s a contractor), “normal” to go days on end without sleeping and still manage to be strong for his family.  I feel as though my vision suddenly became crystal clear in that moment and I saw that none of this was “normal” and saw my father as the hero that he was…and still is.

Suddenly the man I barely knew, was someone who seemed invincible and who showed me his love in the clearest and deepest ways.  I knew how much he was probably hurting inside but he put my mother’s feelings first…and my youth first.  I was too naive and idealistic at the time to allow the words “multiple sclerosis” to dampen my mood.  He knew that and he wasn’t about to force me to see things differently.  Instead, he protected my dream land which is ultimately what allowed me to cope so well in the long run.   

Illness affects the entire family and each family member responds differently.  My dad began communicating differently with my mother, my brother, and myself which shifted our entire family…we became a family.  Granted that took effort from all of us, but we needed someone to steer the ship and without the blink of an eye he did it.  I still can’t fully grasp how.

Things that were challenging for him my for the first 11 years of my life were suddenly easy, like making time to come to a school performance.  Bills he used to worry about suddenly weren’t an issue.  He would spend hours patiently guiding me with my injection every night as if it was just part of a routine since I was a baby.

With all of this business on crutches, I have been reflecting on the first time I was “dependent” because of MS at that ripe age of twelve.  When I was with my dad this past Sunday evening, Father’s Day, he asked how I was doing even though he already knew because he’s had to help me so much the last couple months.  I looked at him with a smile and gave him a sarcastic remark about how I’ve never been better and that I’m certainly not hiding any pain.  In response, he put his arms around me and kissed my forehead.

As helpless as he must have felt in that moment, his action was the best thing he could have done for me.  He was showing me he understood my reality, that I didn’t have to say it, and that he would take it all away if he could, just like he wanted to while eating falafel in Westwood fifteen years ago.

His action on Sunday reminded me that in the times when I feel he doesn’t know me, it’s because it’s toopainful to see what I go through.  And that he does know what I face every day, he was there for every appointment, he taught me to give myself injections, he watched my late night struggles in pain, he knows how my body had its own plan instead of letting me get him a Father’s Day gift, and he has gone to the ends of the earth to protect me, literally.

I believe that most parents do the best they can, and am a big fan of “the good enough parent” model.  Dads should be appreciated for everyday things…they don’t have to go to the ends of the earth to be a hero in our eyes as we grow up.  That being said, words really cannot express just how grateful I am for my father and how much I admire and appreciate him.

Happy Father’s Day Mr. Zeitouni!