Tuesday, August 18, 2015

What Med X Means To Me: My Feelings The Second Time Around

I can’t begin to describe how excited I am for Medicine X this year. 

I was super excited about it last year, but then my dad died and pretty much everything in my life took a backseat.

The first day of the conference was the funeral of one of my best friend’s dad, who died three weeks after my dad died.  She drove across the state of Michigan to attend my dad’s funeral, and I felt awful that I couldn’t be there to attend her dad’s funeral.

Needless to say, I was a basket case.  I knew I was going to California for Medicine X, but how I actually made it there and back, I’m not really sure. 

I enjoyed the experience, to be sure, as much as I could given the circumstances  that occurred in the weeks leading up to Medicine X. 

If it would have been up to me, I probably wouldn’t have got to Medicine X last year, but my mom told me that I had to keep my prior commitments, that that’s what my dad would have wanted. 

I felt bad going, though, because my head wasn’t in the game – I wasn’t able to give it my full attention.  I wasn’t even thinking that much about health, to be honest.  I was hoping that I wouldn’t flare after my dad died, but given all of the emotional turmoil, I wasn’t sure how I would fare.

Luckily, I had an amazing roommate who made sure that I had people around me.  I felt included, though if I hadn’t had the support, I would have felt completely alone and probably wouldn’t have appreciated the experience to the full extent that I did. 

The effect that Med X had on me was profound.  I was completely overwhelmed by the amazing people that were involved, and the way patients, specifically, were treated.  There is, in my opinion, nothing else like Medicine X. 

I’ve heard some people bashing it lately, and I wish that everyone who wanted to be a part of it could, because it’s a life-changing experience.  I walked away last year with a much clearer sense of who I am as a patient, and how patients have the power to really make change in healthcare. 

I was so affected by the Ignite talks that I started writing mine in my hotel room at Medicine X last year.  I was so inspired by others, and really wanted to share my story with other people.  Last year I was on the Engagement track, where I basically had to Facebook and Twitter the heck out the conference.  In fact, Medicine X is really where I got my Twitter prowess from.  I’m glad that’s all of the responsibility I had given everything else that was going on. 

But this year, I knew I wanted more.  I feel like I came into my own at Medicine X last year.  When I applied for last year’s conference, I really wasn’t too sure about exactly what the Medicine X experience would be like.    

This year, I’m so excited that I’m going to be giving an Ignite talk during Medicine X ED, which is new this year.  I’m excited to share my story.  I’m excited to see old friends and to make new ones.  I’m excited that my roommate this year is a fellow blogger who I have followed online since right after my diagnosis, and I finally get to meet her in person.  And I feel extremely grateful that I’ve had the privilege of experiencing Medicine X not just once, but now what will be twice.     

Excited to be seeing some of you in Cali in about five weeks!

Thursday, August 13, 2015

Dear Dad (#4)

Dear Dad,

Today is August 13, 2015.  Officially a year and one day since you passed away.  How does it feel?  Everyone says the first year is the hardest.  So is there some magical moment that propels you from year one to year two?  Am I supposed to feel different today?  Lighter?  I don’t.  Recently I’ve been having these nightmares where I wake up with a start and am filled with dread that you died.  Then I realize it’s not a nightmare.  It’s real life.  It actually happened.  You are gone. 

Two days ago was my 30th birthday.  It was such a bittersweet day.  I’m glad I’ve been alive for another year, but it is weird not having you here.  And today is the day that my world stopped turning one year ago.

According to Elizabeth Kubler-Ross, there is anticipatory grief.  I guess what I mean is that in the back of my mind, I knew you would die someday, but I anticipated that I would be well into adulthood when that happened, like I would be your age when you died, not that you’d be 62 and I’d be barely 29. 

You didn’t keep your promise dad, and it’s a promise that everyone makes that they can’t keep.  You said you’d always be there and you’re not. 

Are you happy where you are?  Or is there only nothingness?  Nothingness like the hole in my heart that exists because you are gone. 

When I got home from celebrating my birthday last year, I discovered that there had been massive flooding in Michigan and that mom didn’t know where you were.  On the morning of the 12th, Molly texted me to say you had never come home.  I remember being filled with such emptiness, trying to imagine where you might be or what might have happened to you.  I tried to do what I could from New York, calling the Michigan State Police, calling anyone I thought would listen.  But nothing seemed to work.  Then mom called me at around 9 p.m. on the 12th to tell me that you had died.  The world fell out from under me.  I remember repeating over and over again, through my tears, that I didn’t understand.        

I am still waiting for you to walk through the door, say, “Hey babes!  I’m home.” And act like you’re still here, like you were never gone.  But I can’t hear those words out loud anymore.  I can only hear them reverberate around my own head.

At your funeral, I was crying so hard, I couldn’t breathe.  I didn’t know how life would move forward.  And now it’s already been a year.  How is that possible?  I guess we have two choices.  We either stop living, or we move forward even though life no longer makes sense.

Sometimes, some random guy will pass me on the street and will be wearing your cologne.  It’s disarming.  It makes me happy and sad at the same time.  And I have to look really hard to make sure it isn’t you. 

I still struggle with the religious aspects of your death.  As Jews, we commemorate death on the Hebrew calendar, and the date changes every year.  And I wonder why I am forced to focus on another day, when there isn’t a day that goes by when I don’t think of you. 

Being in New York, I’ve found it hard to go to services.  And I feel really guilty because it’s something that you took such pride in doing for your own father.  I am doing my best to find other ways to make your life and death matter.     

I went home to Michigan for the yahrzeit and it was good to be surrounded by Mom, Molly, Bubbie, and Nancy.  We also unveiled your stone, as is tradition.  It’s weird to say, but the stone is nice.  When you died and we were at the funeral home, they asked us if we wanted the same casket we had for Zaydie or if we wanted to look for a different one.  No one else wanted to, but I was hoping that something would speak to me.  It didn’t.  But the stone, if it has to be here and you’re not, is dignified.   

I don’t think there’s ever really enough time in life.  And we only realize this when it’s too late.  There’s so much I would have liked to have said to you.  So many more times we could have talked.  So many things that you have already missed and will miss in the future.  You didn’t get to see me graduate from Sarah Lawrence College with a second Master’s degree.  You won’t get to see Andrew and I get married (assuming he proposes) and you won’t get to be a grandfather to my future children.

All that I have left are pictures and memories.  Some days that feels like enough, but most days it definitely doesn’t. 

“Summer has come and passed/ The innocent can never last/ Wake me up when September ends”

-         Green Day



If you are interested in reading the other Dear Dad letters, you can read #1, #2, and #3.

Wednesday, August 5, 2015

Gifts For Chronically Ill People

RA Guy recently spearheaded the Hope Care Package Exchange.  The rules were simple.  You would have one person assigned to send you a care package, and you would be assigned one person to send a care package to.  There was a $20 to $25 limit on each package.   

I wanted to send a care package that had some fun, but useful, illness related items. 

Here is what I sent in my care package:

“Thank You For Existing Card” Tiny Card – Emily McDowell Studio – http://emilymcdowell.com/products/145-t-tiny-thank-you-cards-set-of-10-thank-you-for-existing (This is the same person who has gotten a ton of press for creating Empathy Cards for those with chronic illnesses)

With the exception of the cards, which I bought online, I bought everything in the care package that I sent at C.O. Bigelow.  They only have one store, which is located in New York, but they also have an extensive website, although it does not include every product that they sell in the store.

I had a lot of fun picking this stuff out.  Honestly, I love giving gifts.  I like making other people happy.  Even when my wallet is running on empty, I get more joy from gifting others than I do from gifting myself.  

Here is what I received in my care package:

This care package came with the following note, as it was sent from Amazon.  

This is actually a great idea.  If you have favorite products you want to share with someone else, and you know exactly what they are, you don’t even have to leave the house.  You can simply go to Amazon, order them, and have them sent directly to the recipient. 

I’ve never tried any of these products, so I am excited to try them!  

I also recently had a chronically ill friend who was hospitalized, so I took a care package to her.  It’s easier to give a care package in person because then you aren’t really limited in the size of what you take, whereas when mailing, shipping has become pretty expensive, so I try to keep those things small. 

I know my friend was interested in adult coloring books, so I took her a coloring book and markers.  I also know that my friend is really into Korean beauty products, so I bought her a few of those, as well.  When assembling care packages to people you know rather than strangers, it’s easier to be a bit more personal and targeted in what you include. 

Tony Moly Hand Cream – I purchased Cocoa scented but could not find online.  My second choice was Peach –http://www.urbanoutfitters.com/urban/catalog/productdetail.jsp?id=31754682&category=BRANDS&color=067

Finally, I currently have a friend going through some significant health challenges.  I wanted to change it up a bit and get her something that was more meaningful than giving her products she could use as she’s going through a lot right now and I didn’t want to overwhelm her or assume that she is knee deep in knowing that she is ill.  I wanted to get something that was inspirational but not religious.  A care package, per se, like the others, didn’t feel quite right in this situation, so I went with: 

I don’t share all of these different things to toot my own horn about the gifts I give.  I did this because I love gifting people, and especially when talking about chronically ill people, I wanted to do something that would brighten each person’s day just a little bit.

And I wanted to give you ideas of what kinds of gifts you could give to the chronically ill people in your life – or even for yourself – for you, from you!