Thalassemia Patients and Friends

An Angel's Corner => Tribute to Lisa Cammilleri (1970-2004) => Topic started by: Danielle on February 12, 2006, 01:59:07 AM

Title: How I met an Angel ...
Post by: Danielle on February 12, 2006, 01:59:07 AM
I'll never forget the day I met Lisa.  It was my very first TAG Conference, in New Jersey, 1992.  A friend of mine was introducing me to people, Thals and non-Thals, and I hadn't found out until later on that Lisa actually had Thalassemia.  When I met her, I had no idea.

At the time, the only Thals I knew were Thals that actually looked like Thals.  I don't mean that in a derogatory way, but I'm sure you know that many Thals tend to have a typical appearance.  You can sometimes just tell in the facial features, mostly with the patients who weren't treated right away.  Needless to say, I was speechless when I found out that Lisa was a Thal.  She was just so beautiful, and so healthy looking.  Her smile lit up a room, and was extremely contagious.  Her laughter was quite contagious as well.   :biggrin

She was just so adorable, and from that point on, I never forgot her face.  I always looked for her when the TAG conferences came around, and we would hang out all night and laugh like crazy.  That first time I met her, I can still remember like it was yesterday.  We spent the entire night, well into the morning, just sitting on the floor of the hotel lounge area with a few other friends (Thals and non-Thals) and just laughed all night.  She had the cutest giggle.

I miss her smile and laugh.  I miss her awesome personality, and outrageous selflessness.  She always thought of everyone before herself.  She was so kind to everyone, and always wanted to help.

I find myself very angry that she was taken from us, including her wonderful mom, and her awesome friends Andy and Angela.  I don't think it's fair that she fought so hard, and didn't get to live past 34.  I've lost so many friends with Thal, as I'm sure many of you have, and I cannot help but feel very sad about it.  Lisa would probably still be here today if she didn't get Hep C, and that hurts me even more, because she wasn't even technically taken from having Thalassemia.  She was taken from a complication due to Thal, not Thal itself.

I'm sorry, sometimes my angry feelings show through in my posts, and that's not what I wanted for this one.  I'm just still so upset about her passing, and wish she could've gotten a new liver, so she could live longer.  I'm going to end this here, because I'm getting upset, but I will add more posts in the near future.

We love you, Lisa.  May you rest in peace.  We will miss you, until we meet again some day.   :sadyup

God bless you, sweetheart.   :heartred
Title: Re: How I met an Angel ...
Post by: Andy Battaglia on February 12, 2006, 02:35:58 AM

Your post was beautiful. I really do think that to know Lisa was to love her.  :heartred
Title: Re: How I met an Angel ...
Post by: Danielle on February 12, 2006, 02:42:25 AM
Thank you, Andy.  I agree that to know her was to love her.   :sadyup

I hope she knew how loved she really was/is.   :(
Title: Re: How I met an Angel ...
Post by: Andy Battaglia on February 12, 2006, 04:06:04 AM
People often ask me how I got involved with thalassemia, and that question leads to how did I meet Lisa. And the answer to that is, believe it or not, comic books. I own a comic book store in Rochester, NY, the same city where Lisa was born and lived all her life. My friend Maria had told me about this southern girl who had got a job at the store where Maria worked and then brought her into my store to meet me. That was Angela. Angela told me about her friend, Lisa and told me a little about her. Later Angela invited me to look at her Sarah McLachlan website and when I did, I saw a mention of Lisa and found a link to Lisa's personal site. I read about her and learned a lot more about thal than I had known already. Yes, I actually had some prior knowledge of thal because a thal minor has worked for me for many years. Shortly after that, Angela brought Lisa into my store. Lisa loved comic books, especially Spider-Man, her favorite! Lisa and I started to talk while she looked at the comics and we quickly realized we had a lot in common. We had both grown up in the same part of the city and had even gone to the same high school, although being much older, I was actually in high school at the same time as Lisa's mom. We talked about our high school and then got on to our hospital horror stories. We had both been held captive...ummm...I mean cared for,  in the same hospital and both had tales that would make you run as fast as your legs would carry you from that hospital. We really hit it off and became immediate friends. It wasn't long after that we had become best friends and decided that we were now brother and sister.

Lisa loved her comic books so that meant frequent visits to my store. On each visit, Lisa would first ask for her hug. Life was getting harder for Lisa because her hepatitis, which had gone into some remission while she was taking interferon, had come back worse than ever once she stopped the interferon. The side effects are very harsh and Lisa couldn't keep up for the full year recommended. The hugs made us both feel better and for one moment it would seem that nothing could happen to Lisa as long as we hugged.

Because Lisa was having so many problems, I started to do some research online to try and better understand what was going on with her. Once Lisa realized I was committed to learning about thal she invited me to join her group on MSN. I joined and was then invited to my first group chat where I met some people who are still friends today...and it was nice seeing Maako, Shaneez and Vittey all show up at our most recent chat earlier this month. There's a special place in my heart for my Maldivian friends and I hope you guys all know that. At the next chat, one month later, I met Shilpa, who also has become a good friend and has helped me understand so much about what it is to live the life of a thal. Meeting these people and becoming online friends with them and seeing that even though I wasn't a thal, that they all readily accepted me as a friend, made a big impression on me. I started reading the message board regularly and made one stark realization. People were coming to the group with many questions and problems, and too many of them weren't finding any help. I saw that the group needed someone who could help out and that I would do what I could to help Lisa and my new friends. I already spent a good part of my life online because of the nature of the comic business. Almost all of my ordering of products is done online, along with much of the research to help with that ordering, and most communication with customers. I was already online so much and had become very good at doing searches. I found that much of the information people are looking for can be found online if one is stubborn and searches long enough. Much of what can be found is very technical and not easy reading but the more I read of it, the better I got at understanding what I was reading. I was a bit nervous about doing posts about a medical condition so I started out with something where medical knowledge wasn't necessary. I remember repsonding to a post from a guy whose fiance was a thal and that she felt like she wasn't worthy of a normal life because of her thal. I told him to tell her that she was just as deserving as anyone else and that she should never feel like she is less than anyone else. After I started getting a bit involved, I talked to Lisa and she said it would be a great help if I would try to answer more of the posts, as she wasn't able to keep up as much as she would like. With that, I decided that I would do my best either to answer posts or find someone who could answer. I found myself learning all I could about thal and its related conditions and treatments and soon was answering many posts. Lisa was really happy that I had taken such an interest, but what less could I do for my little sis?

Once I became so involved, Lisa made me assistant manager of the group and I began to feel more of a responsibility to her and the members of her group. As Lisa's health began to get worse, I felt even more that I should take a bigger role in not only helping, but also growing her group so that it would reach more people. Lisa was delighted to see the growth and even when she was in the hospital she would ask me every single day about the group and how many new members had joined. Everyone here meant so much to Lisa. She knew how important her creation could be to people and she wanted to reach out to the whole thal world and let them know they are not alone.

Since Lisa has been gone, it has been hard at times for me to carry on but knowing how much it meant to her has helped keep me motivated and the friendship of so many members of the group and actually meeting so many of you at Pune and Dubai has done wonders to keep me energized and involved. Now that I have known so many of you face to face, and know you are my friends, I find it so much easier to stay motivated. Before I went to Pune, Lisa was the only major I had met in my life, but now I know a bunch of you, so it's not going to be easy to get rid of me.  ;D

So, this is how comic books led me to both meeting Lisa and the world of thal.

One more note:
When Lisa was in the hospital she was so excited because we reached 200 members. Less than two years later, her group had tripled to over 600 members, before our recent move to this new site. Let's make Lisa proud and beat that number.
Title: Re: How I met an Angel ...
Post by: Danielle on February 12, 2006, 04:18:28 AM
Andy, I enjoyed reading that post very much.   :biggrin

I knew that you and Lisa met through comic books, but I never read the whole story until now.  I didn't even know you had a Thal Minor working for you!  How coincidental!  That was such a great story, and your dedication to Lisa and all of us means so much to me.   :love

I truly hope that Angela registers here also.  I should email her again and see if she's ok.  I haven't heard from her in a while.   :sadnope