Five Stages of a Day at Social Security

Posted on April 7, 2017 by smilesandducttape

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I spent Wednesday at the Social Security office in Newark, NJ. It was an emotional day.

Denial

As I walked into the large waiting room, I was surprised that it was so crowded. How could every seat be filled on a Wednesday in the middle of the month? Deep breath. This is going to be fine. Today will be the last time I need to come to this office. I have everything they might need right here in my green Whole Foods bag filled with paper.

Ninety minutes later, I hear my number, I grab my green Whole Foods bag and race up to the counter. I give Jack’s social security number and the woman behind the counter starts typing frantically on her keyboard. Five minutes later she looks up, “I’m sorry Mrs. Torrey. It looks like you need to speak with Ms. @#$%. I can make you an appointment for next week.”

Anger

“Are you kidding me? I’ve been here for ninety minutes already and I called Ms. @#$% 17 times in the last two weeks. 17 TIMES! She has not returned one of those phone calls. THAT IS WHY I AM HERE! I can’t come back next week. I need to see someone NOW!”

I’m not sure if it was my strong words or my teary eyes that got to her, but suddenly the woman behind the counter told me to wait, went back to her keyboard, typed in some magic, and then directed me to another desk. I was introduced to the allusive Ms. @#$%.

Hopeful/Bargaining

I took a deep breath and put on the sweetest smile I could muster, “Thank you so much for seeing me Ms. @#$%. I’m sorry that I have been calling so much, it’s just that we are anxious to get this done. I promise I have ANYTHING you might need here in this bag.”

As I held up the green Whole Foods bag, she started shaking her head. “I just don’t think we can get this done quickly. I need a little more information from you and to have our lawyers look at your son’s case again. I will get back to you next week.”

Depression

Tears are now rolling down my face and I set down my green bag, “Next week? You can’t understand how complicated our lives are. My son turned eighteen last summer. We’ve been working on this for eight months. He should be worried about getting accepted into college this year – not whether he qualifies of SSI.”

The word “college” really got me going and I sat down with my head in my hands, “My son qualities for Social Security. He’s disabled. YOU know that he is! We’ve shown medical records and you have his school information. He will never work a day in his life. It’s not that he doesn’t want to – he can’t. HE can’t do anything on his own. We have given you all our his information. We have followed all the rules. We have filled out all of the paperwork you asked for. How on earth do you not have an answer?”

Ms. @#$% sat looking up at me and didn’t seem to know what to say. She turned around and I was worried she was going to call security, but instead she came back with a box of tissues, “Mrs. Torrey I’m going to get started on this right now. Just let me see your guardianship papers and the other account information we discussed. We are going to find out as soon as we can how to proceed. What is your cell number? I will call you as soon as I hear anything.”

I was shocked. Not prepared for her to be so helpful. I opened my green Whole Foods bag, pulled out the paperwork she asked for and said “Thank you.” There was nothing more for me to say. This is our life. It’s filled with paperwork, disappointments and reminders of what could have/should have been.

Without another word, I stood up, grabbed my green Whole Foods bag and turned around to walk away. I cried the whole way home and then went into the house and cried some more. I called Dan and cried. Then I called Mymom and cried. Once all the tears were done, I took a warm shower and started my day again.

I needed to pick up Jack early so that we could go watch Anna play lacrosse. As Jack and I made our way to the field arm in arm, I realized my mood had completely turned around. Our life is not just filled with paperwork and disappointments – it’s also filled with sunny days, fun games and magical hugs. THAT should be our focus.

Acceptance

Love, Jess

UPDATE: Ms. @#$% called yesterday at 4:59 pm. Jack has been approved for Social Security. Before I hung up the phone the tears started flowing again. She must think I am nuts.

Medication or Menace? (the answer for us is clear)

Posted on March 31, 2017 by smilesandducttape

Another week, another article – this time in the Columbian (The Columbia High School Newspaper – our district supports the Torreys)!

When I was approached by a student at Columbia High School to be interviewed for an article about medical marijuana, I did pause to make sure my family was on board. I have shared it here before, but The Columbian is a different audience. Anna is a junior at Columbia and I didn’t want her to feel uncomfortable with me sharing our story with her classmates. She had two comments, “You share EVERYTHING with EVERYONE – I’m used to it. And, why would I care about people knowing Jack uses medical marijuana? It’s medicine.”

As always – Anna’s right. I do share a lot. I share to help me process what’s going on in our lives. I share to help other special families see that life does not need to be defined by disabilities. I share so “non-special” (is that a thing?) families can see that us special folks aren’t really that different. AND I share to spread the word about what works and what doesn’t.

Medical Marijuana has worked for Jack. It helps him focus and relax and eat Cheetos while watching bad TV – I’m kidding about that last one. That’s one of the problems – marijuana/mary jane/pot/weed/ganga/herb/cannabis – whatever you call it, it has a bad reputation. Many people categorize marijuana as simply a recreational drug and discount all of it’s medical benefits. People have their image of “refer madness” and have trouble wrapping their brains around the fact that it is a far superior and less dangerous drug than many medications that live in most medicine cabinets.

I expected some judgement from older generations about using marijuana for medicinal reasons, but I was startled to see that even high school kids seem to have a hard time excepting medical marijuana as a real medication. 54% of Columbia High School students interviewed for this article did not think it should be allowed to to treat illness on school grounds. I find that shocking. I do hope this article helps to educate and open people’s mind to new alternatives for treating people with nerve pain, spasticity, MS, cancer, seizures, glaucoma, etc.

Clearly it’s time for marjiana to find a good public relations team. Jack would be happy to be a spokesperson.

Love, Jess (Pot Mama)

Trying to be Duct Tape

Posted on March 23, 2017 by smilesandducttape

Look what Anna stumbled upon while on our School District’s website:

In case you missed it – check this out!

Jack and I have also had the pleasure of speaking to several classes at South Orange Middle School and are scheduled to speak at an event for CPNJ, a Clinton School fundraiser and a few book clubs. Never did I imagine speaking being part of our journey, but here we are.

I was talking with a friend last week who has a child going through a difficult time with his own challenges, and she said, “I can’t wait to be on the other side of this. I can’t wait to be in a place where I can help other families.” All I could say was, “You’ll get there. It’s awesome!”

We could have reached this place and just lived our new normal, but our family was eager to thank everyone who helped us along the way (our duct tape). I’ve never been great with “thank you notes”, so instead we chose to thank our duct tape by paying it forward – by trying to BE DUCT TAPE.

Whether we are delivering Boxes of Fun (Anna and her Columbia High School friends have taken over, but Jack and I still deliver) or talking on the phone to a newly diagnosed ALD family or speaking to a group of young people about kindness – it’s confirming that we are on the other side AND it’s our way of thanking all of you.

I don’t believe that nature/life has a perfect plan for all of us – I’ve witnessed too much to make sense of that as a reality. What I do believe is that we all have the power to make the most of the lives we are living. I might not always make the best choices, but I will always do my best to help others. If our family can be a little bit of duct tape for someone else, we have done our job.

Love, Jess