Sunday, October 2, 2016

Angry

Debbie was the first person to come up to me and make me feel welcomed in this little town of Roosevelt, NJ. It was 1980, and I was sitting on the swings by myself on the playground, mad that I had to move across town where I had tons of friends and to this new town where I knew no one. Debbie and I became fast friends, and we spent hours and hours together. We told each other our deepest secrets, we supported each other and she fiercely protected me. I escaped to her house many times, feeling the normalcy of a family life that I craved. We spent summers at one of three local town pools called "Pine Valley," and she often drove us to the Jersey Shore, where we would stop for a roll and cream cheese along the way. We did many first things together that in small towns, happened when we were far too young. These were crazy things, but at the same time, we were also pretty good, and she kept me in line.

I remember once when we were at Woolworth's and some of our friends stole some make-up, so I stole a lipstick. She didn't steal anything and told me that I shouldn't have taken it. I said, "But they did!" And she said, that was them, and we shouldn't do it. And I never stole again.

I remember going to the movies with Debbie and the woman paid me back more than she should have. Excitedly, I walked away knowing I had more money to spend. Debbie asked me, "What if the woman's boss counts her drawer and she is short, and she has to pay the money back?" I now return money when I am given back too much.

We shared the same hairdresser and one day our hairdresser made a very racist remark in front of Debbie. Debbie never went back to her again. She taught me to take a stand against people who treat others differently and with hate.

Debbie had a member of her family who had polio as a child and used crutches; she had a cousin who suffered from some kind of mental disability. They were over her house enough for me to know them and watch her interactions with them. To her, they were totally normal and no different than us. To me, I was originally a bit scared of them. She taught me tolerance and how to love and to accept differences.

Debbie is only a little over a year older than me, but she was always much wiser. And she taught me a lot. We are still best friends today, along with our best friend Abigail. I love them both so much and am happy to see them two to three times a year when I visit NJ. We grab dinner and drinks in Princeton, have dessert at Thomas Sweet, and it's as if no time has passed.

My mother died young of breast cancer as did my aunt and great aunt. In 2003, when I tested positive for the BRCA 1 gene, I decided to have a prophylactic double mastectomy and oophorectomy. I reduced my chances of getting breast cancer from 85% to 5%, and ovarian cancer from 50% to 2%. I felt in control and that I escaped the horrible fate of several members of my family.

When Debbie's colitis became too much, I supported her as much as I could and encouraged her to have a colectomy. To me, this was a similar surgery to mine; get rid of the stuff that is bad for you, and live a full and healthy life albeit a bit different. I called her Wonder Woman, and she began to feel the strength of Wonder Woman, I believe. Friends got her Wonder Woman knick knacks, and she felt strong and knew she was making the right decision. She finally had the surgery and it went so well, and she finally felt better!

But there was some nagging issue she had. Something was wrong with her leg. Even before the surgery, she could not walk like she used to. She had to wear a boot that she called a funny name I can't remember right now, but it was a part of her, so she had to name it! Something was wrong with her nerves...some kind of neuropathy. But she had to put that on the wayside until after her surgery.

Now that the surgery was over, it was time for Debbie to aggressively figure out what was wrong with her leg. After visiting doctors and having a spinal tap (with terrible side effects), MS was ruled out, and we were relieved. She went to another doctor at Columbia and had a test done in her tongue and was told it could be something that is due to a rare reaction to a medicine she used for her ulcerative colitis, and that the worst it could be is ALS. We knew it couldn't be the second, so we figured it was the first.

Until I got the call. When I heard Debbie's voice on the other end of the phone, it sounded good. I was relieved. Until she said the words, "I have ALS." "NO!" came out of my end of the phone. How could I be hearing this? How is it possible that my beautiful, 49-year-old friend and mother of three, and fantastic first grade teacher, could have this disease?

I hung up the phone after speaking for a bit, and just slumped in my chair. And I cried. My mentor, my big sister, my best friend is sick and I truly don't know how to help. She has a huge support system of fiercely loyal friends, three female cousins that are like sisters,  her brother and parents, and of course her husband and children. But what can I do for her? How can I escape a disease of cancer and she can't escape this disease?

I am angry. I am sad but I am also angry. This week, this news has affected my work relationships. I am curt. My mind is on other things. I cried at a meeting because I am upset. And things like this will happen when I least expect it. And I can't control that.

But what I can control is how I will be there for Debbie. I have and will continue to pray for her that her second opinion will say that she is one of the 8% that is misdiagnosed and that there will be a cure soon for ALS with so much money raised from the Ice Bucket Challenge. I have my wonderful group of JWRP friends that pray for her when I ask. I need to make her feel as normal as possible. I need her to know how much I love her and that I would do anything for her. I need her to know that when I kick a boxing bag, I am kicking ALS and giving an extra kick in her honor. I need her to know that I am angry for her. And that she will always be my Wonder Woman.

You can read Debbie's blog here.


2 comments:

Anonymous said...

Lisa, I am so sorry your friend has to deal with this terrible illness, and that you have to watch her go through it. I hope the strength of your friendship brings both of you comfort. Your personal strength and courage is evident in your decision regarding your own predisposition for illness, and even though there really are no adequate words, I am thinking of you, and wishing you and your friend peace.

Lisa Winer said...

Thank you, Wendy. That means a lot. xo